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FIRST FIRST EDITION
EDITION
AUTOIMMUNE
Handbook & Resource Guide

AUTOIMMUNE DISEASES
DISEASES
4919 Route 22, Amenia, NY 12501

518-789-8700 • 800-562-2139 • FAX 845-373-6360 GREY HOUSE PUBLISHING
www.greyhouse.com • email: books@greyhouse.com
Grey House Health & Wellness Guides
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AUTOIMMUNE
DISEASES
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FIRST EDITION
AUTOIMMUNE
DISEASES
GREY HOUSE PUBLISHING
Grey House Health & Wellness Guides
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PRESIDENT: Richard Gottlieb
PUBLISHER: Leslie Mackenzie
EDITORIAL DIRECTOR: Laura Mars
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MARKETING DIRECTOR: Jessica Moody
Grey House Publishing, Inc.
4919 Route 22
Amenia, NY 12501
518.789.8700
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Copyright © 2021 Grey House Publishing, Inc.
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First edition published 2021
Publisher’s Cataloging-In-Publication Data

(Prepared by The Donohue Group, Inc.)
Title: Autoimmune diseases handbook & resource guide.

Other Titles: Autoimmune diseases handbook and resource guide
Description: First edition. | Amenia, NY : Grey House Publishing, 2021. | Series: Grey House health &
wellness guides | Includes bibliographical references and index.
Identifiers: ISBN 9781637000359
Subjects: LCSH: Autoimmune diseases—Popular works. | LCGFT: Reference works.
Classification: LCC RC600 .A98 2021 | DDC 616.978—dc23
Table of Contents
Publisher’s Note. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix
Section One: Studies & Statistics About Autoimmune Diseases

General
Autoimmunity may be rising in the US. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
Autoimmune Diseases and Your Environment . . . . . . . . . . . . . . . . . . . . . . . . 6
Crohn’s Disease
Crohn’s Disease Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Living With Crohn’s Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
Diabetes
National Diabetes Statistics 2020 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
Endometriosis
Office on Women’s Health Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49
Fibromyalgia
Points to Remember about Fibromyalgia . . . . . . . . . . . . . . . . . . . . . . . . . . . 51
Facts and Myths Pertaining to Fibromyalgia. . . . . . . . . . . . . . . . . . . . . . . . . 56
Graves’ Disease
Graves’ Disease Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67
Hyperthyroidism Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69
Guillain-Barré Syndrome
Guillain-Barré Syndrome Fact Sheet. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
Hashimoto’s Thyroiditis
Hashimoto’s Thyroiditis Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 81
Lupus
Lupus Facts & Statistics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85
Points to Remember about Lupus . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89
Lyme Disease
Tick-Borne Disease Working Group Report to Congress . . . . . . . . . . . . . . . 95
Multiple Sclerosis
The Evolving Landscape in the Management and Treatment of
Multiple Sclerosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 203
Environmental factors in autoimmune diseases and their role in
multiple sclerosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 219
Myasthenia Gravis
Do You Have Muscle Weakness? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 231
Myasthenia Gravis Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 232
v
Table of Contents
Psoriasis
Points to Remember about Psoriasis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 237
Rheumatoid Arthritis
Points to Remember about Rheumatoid Arthritis . . . . . . . . . . . . . . . . . . . . 241
Scleroderma
Overview of Scleroderma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 247
Sjögren’s Syndrome
This is Sjögren’s . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 259
Ulcerative Colitis
Inflammatory Bowel Disease Amid the COVID-19 Pandemic. . . . . . . . . . 261
Vasculitis
Vasculitis Symptoms of the Central and Peripheral Nervous Systems
Fact Sheet. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 273
Section Two: Types of Autoimmune Diseases

Addison’s Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 279
Agencies & Associations. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 280
Foundations & Research Centers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 280
Support Groups & Hotlines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 280
Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 280
Digital Resources. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 281
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 281
Celiac Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 283
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 286
Crohn’s Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 287
Libraries & Resource Centers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 288
Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 296
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 296
Diabetes, Type 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 299
Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 310
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 311
vi
Table of Contents
Dressler’s Syndrome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 313

Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 316
Endometriosis. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 317
Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 320
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 320
Fibromyalgia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 323
Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 325
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 326
Graves’ Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 327
Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 330
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 330
Guillain-Barré Syndrome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 331
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 333
Hashimoto’s Thyroiditis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 335
Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 337
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 337
Lupus (Systemic Lupus Erythematosus). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 339
Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 345
vii
Table of Contents
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 346

Lyme Disease, Chronic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 347
Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 351
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 351
Multiple Sclerosis (MS) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353
Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 360
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 361
Myasthenia Gravis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 363
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 368
Pernicious Anemia. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 371
Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 374
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 375
Psoriasis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 377
Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 380
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 380
Rheumatoid Arthritis (RA) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 383
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 394
Scleroderma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 397
viii
Table of Contents

Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 402
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 402
Sjögren’s Syndrome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 403
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 404
Ulcerative Colitis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 407
Journals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 416
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 416
Vasculitis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 419
Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 421
Section Three: Appendixes

Medication List . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 423
Entry Name Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 431
Geographic Index. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 437
ix
Publisher’s Note
Grey House Publishing is pleased to announce Autoimmune Diseases Handbook & Resource
Guide—the third volume in our new Health & Wellness Guides series that supports our
long-standing consumer health titles on such topics as mental health, older Americans, chronic
illness, pediatric disorders, people with disabilities, and learning disabilities. This title follows
Dementia Handbook & Resource Guide and Cardiovascular Disease Handbook & Resource
Guide.
This work covers 21 of the most prevalent autoimmune diseases, from Addison’s to Vasculitis. Our
immune system is a complex network of cells and proteins that defends our body against infection.
When something in that network reacts in the wrong way, or overreacts, to a signal in the body, it
causes our body to defend something that doesn’t need defending, basically attacking itself. Joints
become inflamed, skin changes texture, and life-sustaining hormones think they are not needed.
There are more than 80 different autoimmune diseases, affecting every part of the body. Because
many of these disease symptoms are the same as other diseases, diagnosing an autoimmune disease
can be a long and difficult process.
Autoimmune Diseases Handbook & Resource Guide combines valuable, easy-to-understand

educational information for patients and their families, with national and state statistics and
discussions about prevention, treatment and outcomes. It offers resources on 21 specific types of
autoimmune disease, including Celiac, Diabetes Type 1, Endometriosis, Fibromyalgia, Lupus,
Lyme Disease, Rheumatoid Arthritis, Scleroderma, and more, with notes on disease subtypes. This
new volume is arranged in the following sections:
Section One: Studies & Statistics About Autoimmune Diseases

This robust, colorful section of 278 pages includes detailed reports, fact sheets, graphs and
statistics from a number of sources, including the Centers for Disease Control, the National
Institutes of Health, associations and foundations. It begins with general information about why
autoimmune disease is on the rise, and how environmental factors play a role.
The wealth of material that follows is organized by specific disease—17 of them, from Crohn’s to
Vasculitis. Most reports included follow a similar format—offering easy-to-understand facts about
prevalence, cause, and treatment supported by photos and colorful graphs and charts. Sprinkled
throughout are more detailed research articles, such as “Facts and myths pertaining to
fibromyalgia,” “Environmental factors in autoimmune diseases and their role in multiple sclerosis,”
and “Inflammatory bowel disease amid the COVID-19 pandemic.” Although longer and more
word-heavy than other items in this section, the valuable information they provide for those with
autoimmune diseases and their community and medical professional network made it difficult to
not include them.
Section Two: Types of Autoimmune Diseases

This section includes 21 chapters, each covering a specific autoimmune disease from Addison’s
Disease to Vasculitis, and starting with a clear, concise description of the disease profiled.
Following the description is a variety of resources for patients, their families, and caregivers,
including Agencies & Associations, Libraries & Resource Centers, Foundations & Research
Centers, Support Groups & Hotlines, Journals, and Digital Resources.
Section Three: Medication List and Indexes

• Medications includes lists of drugs by disorder, both generic and brand names.
• Entry Index lists all directory entries alphabetically.
• Geographic Index organizes listings alphabetically by state.
xi
Publisher’s Note
Two Free Years of Online Access

In addition to the print directory, Autoimmune Diseases Handbook & Resource Guide includes two
years of free online access to G.O.L.D., Grey House OnLine Databases. This gives you immediate
access to the most valuable in-depth information on the many causes of these conditions, early
warning signs, diagnosis, treatment options, advice for caretakers, preventative therapy, and
support. G.O.L.D. also offers easy-to-use keyword searches, organization type and subject
searches, hotlinks to web sites and emails, and so much more. Call 800-562-2139 for a free trial or
visit http://gold.greyhouse.com for more information.
The Autoimmune Diseases Handbook & Resource Guide is a necessary reference for public and
academic libraries, as well as health care and senior center collections, providing information
crucial to sufferers of autoimmune disease, their broader support network, caseworkers, social
workers, and other health care providers.
xii
STUDIES & STATISTICS ABOUT AUTOIMMUNE DISEASES
This first section of Autoimmune Diseases Handbook & Resource Guide includes the most current information and
research regarding many of the most prevalent autoimmune diseases. The data comes from the Centers for Disease
Control and Prevention, the National Institutes of Health, the Office for Women’s Health, a number of national
foundations and associations, and several research publications. Totaling nearly 300 pages, Studies & Statistics
offers educational material on 17 specific autoimmune diseases, and starts off with general information. The section
is printed in color to emphasize its photos, tables and charts. The detailed table of contents that follows the graphic
below will to help you maneuver through the large amount of information presented.
General
Autoimmunity may be rising in the US . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
Autoimmune Diseases and Your Environment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Crohn’s Disease
Crohn’s Disease Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Living With Crohn’s Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
Diabetes
National Diabetes Statistics 2020 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
Endometriosis
Office on Women’s Health Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49
Fibromyalgia
Points to Remember about Fibromyalgia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51
Facts and myths pertaining to fibromyalgia. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56
1
Studies & Statistics / Table of Contents
Graves’ Disease
Graves’ Disease Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67
Hyperthyroidism Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69
Guillain-Barré Syndrome
Guillain-Barré Syndrome Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
Hashimoto’s Thyroiditis
Hashimoto’s Thyroiditis Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 81
Lupus
Lupus Facts & Statistics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85
Points to Remember about Lupus . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89
Lyme Disease
Tick-Borne Disease Working Group Report to Congress . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95
Multiple Sclerosis
The Evolving Landscape in the Management and Treatment of Multiple Sclerosis . . . . . . . . . . . . . . . . . . . 203
Environmental factors in autoimmune diseases and their role in multiple sclerosis . . . . . . . . . . . . . . . . . . . 219
Myasthenia Gravis
Do You Have Muscle Weakness? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 231
Myasthenia Gravis Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 232
Psoriasis
Points to Remember about Psoriasis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 237
Rheumatoid Arthritis
Points to Remember about Rheumatoid Arthritis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 241
Scleroderma
Overview of Scleroderma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 247
Sjögren’s Syndrome
This is Sjögren’s . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 259
Ulcerative Colitis
Inflammatory bowel disease amid the COVID-19 pandemic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 261
Vasculitis
Vasculitis Symptoms of the Central and Peripheral Nervous Systems Fact Sheet . . . . . . . . . . . . . . . . . . . . 273
2
Studies & Statistics / General
Autoimmunity may be rising in the United States

NIEHS scientists say their findings could lead to a better
understanding of what causes related diseases, and how to
prevent them.
BY ROBIN ARNETTE
Autoimmunity, a condition in which the body’s immune system reacts with components of its own cells, appears to be
increasing in the U.S., according to NIEHS scientists and their collaborators.
In a study (https://www.ncbi.nlm.nih.gov/pubmed/32266792) published April 8 in

Arthritis and Rheumatology, the researchers found that the prevalence of antinuclear
antibodies (ANAs), the most common biomarkers of autoimmunity, is significantly
increasing in the U.S. overall and particularly in certain groups. These groups include
males, non-Hispanic whites, adults 50 years and older, and adolescents. The study is
the first to evaluate ANA changes over time in a representative sampling of the U.S.
population.
"The reasons for the increases in ANA are not clear, but they are concerning and
may suggest a possible increase in future autoimmune disease," said corresponding
and senior author Frederick Miller, M.D., Ph.D.
(https://www.niehs.nih.gov/research/atniehs/labs/crb/pi/ea/index.cfm), deputy chief of
the NIEHS Clinical Research Branch. Among his co-authors were Christine Parks,
Ph.D.
(https://www.niehs.nih.gov/research/atniehs/labs/epi/pi/chronic/staff/parks/index.cfm),
a staff scientist in the institute’s Epidemiology Branch, and NIEHS Scientific Director
Darryl Zeldin, M.D. (https://www.niehs.nih.gov/research/atniehs/labs/iidl/pi/enviro-
Miller also heads the NIEHS Environmental
cardio/index.cfm) Autoimmunity Group. His team works to
understand how genes and the environment
"These findings could help us understand more about the causes of these immune may play a role in autoimmune diseases.
abnormalities and possibly learn what drives development of autoimmune diseases (Photo courtesy of Steve McCaw)
and how to prevent them," added Miller.
3
Immunofluorescent staining of human cells

shows ANAs as bright dots. (Photo courtesy
of Edward Chan, Ph.D., University of
Florida)
Concern regarding adolescents

The study included 14,211 participants, 12 years and older, in the U.S. National
Health and Nutrition Examination Survey (NHANES). Through immunofluorescence,
a technique in which fluorescent dye is used to visualize antibodies, the scientists
examined the frequencies of ANAs in subjects from three time periods.
1988-1991: 11.0%, or 22 million affected individuals.

1999-2004: 11.5%, or 27 million individuals.
2011-2012: 15.9%, or 41 million individuals.
Of the four demographic groups that displayed considerable ANA increases, findings
in the adolescent group were the most worrisome to the research team. The values
for 12- to 19-year-olds increased nearly three-fold over the study period.
The researchers want to know why they are seeing these changes in autoimmunity in
each of the groups, especially teenagers. The scientists suggest that because people
have not changed much genetically during the past 30 years, factors related to Parks is a member of the NIEHS Chronic
Disease Epidemiology Group. She focuses on
lifestyle or the environment may be involved in ANA increases.
environmental causes of rheumatoid arthritis
and other autoimmune diseases. (Photo
courtesy of Steve McCaw)
Autoimmune diseases
"These new findings may have important public health implications and will help us design studies to better understand why
some people develop autoimmune diseases," said Parks. She added that autoimmune diseases include more than 100
chronic, debilitating conditions.
Determining whether autoimmune diseases, such as lupus or myositis, are increasing in prevalence requires a clinical
evaluation, which was not performed in this study. Nevertheless, ANAs are commonly seen in patients with these conditions
and similar autoimmune disorders.
4
Zeldin noted that other studies have suggested there is an increase in autoimmune
disease prevalence, but the findings are based on incomplete data. He and Miller
hope that a national registry of autoimmune diseases will be established so that they
can examine changes over time, define geographic hotspots, and eventually
understand what is causing them.
"Hopefully, this important study will stimulate further research on the environmental
factors related to the apparent increased prevalence of autoimmune diseases,"
Zeldin said.
Citation: Dinse GE, Parks CG, Weinberg CR, Co CA, Wilkerson J, Zeldin DC, Chan
EKL, Miller FW (https://www.ncbi.nlm.nih.gov/pubmed/32266792) . 2020. Increasing
prevalence of antinuclear antibodies in the United States. Arthritis Rheum; doi:
10.1002/art.41214 [Online 8 April 2020].
Zeldin also leads the NIEHS Environmental

Cardiopulmonary Disease Group. (Photo
courtesy of Steve McCaw)
NHANES
The study relied on individuals participating in NHANES (https://www.cdc.gov/nchs/nhanes/index.htm) , a research

program aimed at determining the health and nutritional status of American adults and children.
NHANES, which started in the early 1960s, is a major effort of the National Center for Health Statistics
(https://www.cdc.gov/nchs/) , part of the Centers for Disease Control and Prevention.
The Environmental Factor is produced monthly by the National Institute of Environmental Health Sciences (NIEHS)
(https://www.niehs.nih.gov/index.cfm), OÞce of Communications and Public Liaison. The text is not copyrighted, and it can be
reprinted without permission. If you use parts of Environmental Factor in your publication, we ask that you provide us with a copy
for our records. We welcome your comments and suggestions.
Director of Communications: Christine Bruske Flowers | Editor-in-Chief: Kelly Lenox | Science Editor: Robin Arnette | Photo Editor:
Joe Poccia
5
Autoimmune Diseases and Your Environment

A healthy immune system defends the body against
disease and infection. But if the immune system
malfunctions, it mistakenly attacks healthy cells, tissues,
and organs. Called autoimmune disease, these attacks can
affect any part of the body, weakening bodily function
and even turning life-threatening.
Scientists know about more than 100 autoimmune
diseases. Some are well known, such as Type 1 diabetes,
multiple sclerosis, lupus, and rheumatoid arthritis, while
others are rare and difficult to diagnose. With unusual
autoimmune diseases, patients may suffer years before
getting a proper diagnosis. Most of these diseases have no
cure. Some require lifelong treatment to ease symptoms.
Autoimmune diseases are on the rise
Collectively, these diseases affect 5-9% of the
population and create considerable personal and public
health burdens. Race, ethnicity, and sex are genetic
characteristics linked to the chance of developing an
autoimmune disease. These diseases afflict women more
than men, and are among the leading causes of death for Unraveling the genetic and environmental underpinnings
young and middle-aged women.1 of autoimmune disease remains a focus at NIEHS and the
National Toxicology Program (NTP). Research progress
Autoimmune diseases appear to be increasing throughout leads to discoveries such as:
the world, yet the reasons are unexplained.2 The
prevalence of antinuclear antibodies, the most common • Added risk from ultraviolet (UV) radiation –
indicator of autoimmunity in human cells, increased Short-term ultraviolet radiation exposure, as from
substantially over a recent 25-year span in the U.S.3 outdoor sunlight, may affect the onset of juvenile
dermatomyositis, an illness with muscle weakness and
Research increasingly suggests that autoimmune diseases skin rashes. The chance of illness increased as the UV
likely result from the interactions of environmental index increased to its highest levels in the month before
and genetic risk factors. Autoimmune diseases seem symptoms began.4
more common when people are in contact with certain
environmental exposures, as described below. • Links to childhood poverty – Childhood in a household
with lower socioeconomic status and education levels is
What is NIEHS Doing? linked to rheumatoid arthritis in adulthood.5
For decades, NIEHS has researched how the environment • Agricultural chemical association – Exposure to
may affect development of autoimmune diseases. some pesticides may play a role in the development of
In 2010, the institute gathered an interdisciplinary panel of rheumatoid arthritis in male farmers.6
40 experts to evaluate the state of the science in this area.
The same study shows that in farm wives, an increased
Among many conclusions, the panel stated:
chance of developing rheumatoid arthritis was associated
• Solvent exposure, from working with products such as with other types of farm-related exposures, such as
paint thinners and cleaners, is linked to systemic sclerosis. painting and using solvents. More research is needed on
• Crystalline silica exposure, from working with quartz or these and other potential risk and protective factors.7
granite, for example, can contribute to the development • Genetic factors in autoimmune muscle disease –
of several autoimmune diseases. Using DNA samples from myositis patients of European
• Smoking can contribute to the development of ancestry, NIEHS researchers identified primary genetic risk
seropositive rheumatoid arthritis. factors associated with this autoimmune muscle disease.8
PO Box 12233 • Research Triangle Park, NC 27709 National Institutes of Health

Phone: 919-541-3345 • www.niehs.nih.gov U.S. Department of Health and Human Services
April 2020 Printed on recycled paper
6
National Institute of Environmental Health Sciences
• Insight into genetic link to rheumatoid arthritis – NIEHS is conducting these clinical studies:
NIEHS-funded researchers are closer to explaining why • Immunity Cells in Blood studies how immune cells in
a genetic risk that increases the chance of developing the bloodstream may, under certain circumstances,
rheumatoid arthritis is amplified by environmental contribute to inflammation.
pollutants like cigarette smoke.9
• Adult and Juvenile Myositis investigates the causes,
• Role of nutrition – Vitamin D may help prevent immune system changes, and medical problems
immune dysfunction in older populations.10 For lupus associated with myositis, an inflammatory muscle
patients, NIEHS-funded researchers found that dietary disease that can damage muscles and other organs,
micronutrients—choline, folate, and vitamin B12— resulting in significant disability.
may improve symptoms, but more research is needed.11
• Myositis in Military Personnel compares people who
developed myositis during active duty to military
personnel without autoimmune diseases, to assess
risk factors for myositis.
• Calcinosis Study examines the development
of painful calcium deposits in people with
dermatomyositis, a form of myositis associated with
a skin rash, muscle weakness, and inflamed muscles.
• MYORISK Study seeks to understand the
environmental factors that may result in
dermatomyositis or polymyositis, a form of
myositis that causes muscle weakness on both
sides of the body.
• Rheumatic Disorders in Siblings identifies genetic
and environmental factors by studying families
with siblings or twins in which one of them has
developed an autoimmune disease while the others
have not.
To volunteer for a study on the causes of, and
possible treatments for, autoimmune diseases,
visit www.clinicaltrials.gov.
For more information on the

National Institute of Environmental Health Sciences,
go to www.niehs.nih.gov.
1 Ramos PS, et al. 2015. Genetics of autoimmune diseases: insights from population genetics. J Hum Genet. 60(11): 657–664.
2 Schiffenbauer A and FW Miller. Noninfectious environmental agents and autoimmunity [Book Chapter] The Autoimmune Diseases (2020) pp. 345-362.
3 Dinse GE, et al. Increasing Prevalence of Antinuclear Antibodies in the United States. April 8, 2020. Arthr & Rheumatol. doi: 10.1002/art.41214
4 Shah M, et al. Childhood Myositis Heterogeneity Collaborative Study Group. 2013. Ultraviolet radiation exposure is associated with clinical and autoantibody
phenotypes in juvenile myositis. Arthritis Rheum. 65(7): 1934–1941.
5 Parks CG, et al. 2013. Childhood socioeconomic factors and perinatal characteristics influence development of rheumatoid arthritis in adulthood.
Ann Rheum Dis. 72(3): 350–356.
6 Meyer A, et al. 2017. Pesticide exposure and risk of rheumatoid arthritis among licensed male pesticide applicators in the Agricultural Health Study.
Environ Health Perspect 125(7): 077010.
7 Parks CG et al., 2016. Rheumatoid Arthritis in Agricultural Health Study Spouses: Associations with Pesticides and Other Farm Exposures. Environ Health Perspect.
124 (11): 1728-1734.
8 Miller FW, et al. 2015. Genome-wide association study identifies HLA 8.1 ancestral haplotype alleles as major genetic risk factors for myositis phenotypes.
Genes Immun. 16(7):470–480.
9 Fu J, et al. 2018. Shared epitope-aryl hydrocarbon receptor crosstalk underlies the mechanism of gene-environment interaction in autoimmune arthritis.
PNAS 115(18):4755-4760.
10 Meier HC, et al. 2016. Association between vitamin D deficiency and antinuclear antibodies in middle-aged and older U.S. adults. Cancer Epidemiol Biomarkers Prev
25(12):1559-1563.
11 Strickland FM, et al. 2013. Arthritis Rheum. 65(7):1872–1881. Diet influences expression of autoimmune associated genes and disease severity by epigenetic
mechanisms in a transgenic lupus model.
7
Studies & Statistics / Crohn's Disease
Fact Sheet
News from the IBD Help Center
GENERAL HEALTHCARE MAINTENANCE

It is important to continue general health maintenance. While working with your gastroenterologist, also remember to
speak with your primary care physician about other important issues including:
Vaccinations
Adults with inflammatory bowel disease (IBD) should generally follow the same vaccination schedules as the general
population. People on immunomodulators and anti-TNF therapy should generally avoid live virus vaccines. The best time
to vaccinate is when someone is newly diagnosed with IBD, before any immunosuppressive therapy has begun.
Tuberculosis Screening
Screening should be done before immunosuppressive treatment is begun because immunosuppressants can affect the
outcome of the test.
Tobacco Cessation
In addition to raising cancer risk, cigarette smoking has adverse effects on lung and heart health. It also has a negative
effect on people with Crohn’s disease.
Colonoscopies
These are key in the management of IBD—determining the severity and extent of disease, monitoring the effectiveness of
therapy, checking for postoperative recurrence, and screening for colorectal cancer. Speak with your gastroenterologist
about how frequently you need to have a colonoscopy.
Periodic Blood Testing

The frequency and type of tests depend on IBD medication use and any other medical conditions that exist. A baseline set
of tests before starting IBD therapy is helpful to determine medication-associated abnormalities and benefits.
Osteoporosis Monitoring
Osteoporosis can be a significant medical problem in people with IBD, whose reduced bone mineral densities put them at
increased risk for fractures. Bone loss can occur as a result of chronic inflammation and/or with the use of steroids. Most
bone loss occurs in the first six months of corticosteroid use. The best course of action for osteoporosis prevention is to
minimize steroid use where possible, relying instead on steroid-sparing agents such as immunomodulators and anti-TNF
medications where appropriate. Supplementation with calcium, vitamin D, and the use of drugs called bisphosphonates
while being treated with prednisone and other steroids can also help in protecting your bone health.
Blood Pressure Screening

Some of the medications used in the treatment of IBD, particularly corticosteroids and cyclosporine, can cause an
increased risk of secondary hypertension (high blood pressure). In most instances, the hypertension resolves once the
medication is discontinued.
Irwin M. Suzanne R. Rosenthal IBD Resource Center (IBD Help Center) 888-694-8872 • www.crohnscolitisfoundation.org 1
9
Depression
Various factors, including the chronic relapsing nature of the disease and some of the medications used as treatment,
make people with IBD particularly prone to depression, affecting between 15 and 35 percent of patients. Screening and
appropriate medical treatment are necessary.
Ophthamologic Screening
Corticosteroid use may increase the risk of glaucoma as well as cause some temporary vision changes. In addition,
extraintestinal symptoms of IBD may involve the eye.
Oral Health
Among the extraintestinal symptoms of IBD are aphthous ulcers in the mouth, also known as canker sores. These may be
caused by the IBD itself, or be secondary to nutritional deficiencies. Although not serious, these ulcers can be quite
painful. Mouth rinses and other topical treatments may help relieve the discomfort. Please remember to also see your
dentist for routine dental care.
Cancer Screening
Some IBD patients are at increased risk for colon cancer and will need frequent colonoscopies for screening. People with
IBD should follow the current recommendations for regular screenings for breast and prostate cancer. Women with IBD on
immunomodulator therapy are at increased risk for abnormal pap smears (precancerous findings). Men and women on
immunomodulator therapy are at increased risk of certain skin cancers. Careful monitoring and evaluation are
recommended.
Please use the health care maintenance chart provided on the next page for your records.
10
Healthcare Maintenance Chart

TEST DATE DATE DATE DATE
Tests
x PPD (Tuberculosis skin test)
Vaccinations
x Hepatitis A
x Hepatitis B
x HPV
x Influenza
x Pneumococcal
x Td/Tdap
x Varicella*/Zoster*
Cancer Screening
x Colon Cancer/dysplasia screening (colonoscopy)
x Cervical cancer (Pap smear)
x Breast cancer
x Prostate cancer
x Skin cancer screening
Screening - Other
x Blood pressure
x Opthalmologic
x Osteoporosis (DXA scan)
Laboratory Exam
x Complete blood cell count
x Liver function test
x Creatinine
x B12/folate/iron
x 25 OH vitamin D
x Lipids
x Glucose
x Other
*Live virus vaccines are contraindicated in patients on biologic therapy. Therefore, they should be given prior to
initiating biologic therapy.
Disclaimer: The Crohn’s & Colitis Foundation provides information for educational purposes only. We encourage you to
review this educational material with your health care professional. The Foundation does not provide medical or other
health care opinions or services. The inclusion of another organization’s resources or referral to another organization does
not represent an endorsement of a particular individual, group, company or product.
January 2015
Reprinted with permission from The Crohns’ & Colitis Foundation
11
Living with
Crohn’s Disease
12
What’s Inside Understanding your

131
Understanding your diagnosis ..............................
diagnosis
What is Crohn’s disease? .......................................142 Your doctor has just told you that you have
143 Crohn’s disease. Now what? You probably
Will it ever go away? .................................................
have lots of questions. Some of the most
A brief introduction to the gastrointestinal commonly asked questions are:
(GI) tract .......................................................................143
• What is Crohn’s disease?
Who gets Crohn’s disease? ...................................154 • Is there a cure for Crohn’s disease, and what
The genetic connection ..........................................155 is the outlook (prognosis)?
• How did I get it?
What causes Crohn’s disease? ............................166
No one knows the exact cause(s) • Will I be able to work, travel, or exercise?
of the disease ...............................................................166 • Should I be on a special diet?
What are the signs and symptoms? ...................166
Beyond the intestine .................................................178 • What are my treatment options?
Types of Crohn’s disease .........................................178 • Will I need surgery?
Patterns of disease ....................................................179
• How will Crohn’s disease change my life,
Making the diagnosis .............................................18
10 both now and in the future?
18
Questions to ask your doctor ..............................11
The purpose of this brochure is to provide help-
19
Treatment ...................................................................13 ful answers to these questions, and to walk you
through some key points about Crohn’s disease
21
Managing your symptoms ....................................16 and what you may experience now and in the
Other considerations ............................................17 21 future. You won’t become an expert overnight,
but you’ll learn more as time goes on. The more
21
Surgery ...........................................................................17
informed you are, the better you can manage
Diet and Nutrition .....................................................22 18
your disease and become an active member of
Complementary and alternative
your own healthcare team.
therapies .......................................................................2321
Stress and emotional factors ..............................23 21
General health maintenance............................... 24 22
The Crohn’s & Colitis Foundation provides information for
24
Support......................................................................... 23 educational purposes only, which is current as of the print
25 date. We encourage you to review this educational mate-
Hope for the future ................................................25
rial with your healthcare professional as this information
should not replace the recommendations and advice of
26
Knowledge and support are power! ................26 your doctor. The Foundation does not provide medical
or other healthcare opinions or services. The inclusion
28
Glossary of terms .................................................. 30 of another organization’s resources or referral to another
organization does not represent an endorsement of
a particular individual, group, company, or product.
13
What is Crohn’s disease? colitis and Crohn’s disease, a condition called

indeterminate colitis.
The disease is named after Dr. Burrill B. Crohn,
Will it ever go away?
who published a landmark paper with colleagues
Drs. Gordon Oppenheimer and Leon Ginzburg No one knows exactly what causes Crohn’s
in 1932 that described what is known today as disease. Also, no one can predict how the
Crohn’s disease. disease—once it is diagnosed—will affect a
particular person. Some people go for years
Crohn’s disease (CD) belongs to a group of without having any symptoms, while others
conditions known as inflammatory bowel have more frequent flare-ups, or attacks.
diseases (IBD). Crohn’s disease is a chronic However, one thing is certain: Crohn’s disease
inflammatory condition of the gastrointestinal is a chronic condition.
tract. Symptoms include diarrhea (sometimes
bloody), as well as crampy abdominal pain, Chronic conditions are ongoing and long term.
nausea, fever, loss of appetite, weight loss, Studies show that people with Crohn’s disease
fatigue (tired, exhausted feeling), and, at times, usually have the same life expectancy as people
rectal bleeding. When you have Crohn’s without Crohn’s disease. It is important to
disease, you will not have the same symptoms remember that most people who have Crohn’s
all of the time. In fact, sometimes you may disease lead full, happy, and productive lives.
have no symptoms at all. When you have no
symptoms, this is called clinical remission.
A brief introduction
When reading about inflammatory bowel
diseases, you need to know that Crohn’s dis- to the gastrointestinal
ease is not the same thing as ulcerative colitis,
another type of IBD. The symptoms of these
(GI) tract
two illnesses are quite similar, but the areas Most of us aren’t very familiar with the GI tract,
affected in your body are different. Crohn’s dis- but it’s time you get acquainted.
ease may affect any part of the gastrointestinal
(GI) tract, from the mouth to the anus, but Here’s a quick overview: The GI tract (see
ulcerative colitis is limited to the colon—also figure 1) actually starts at the mouth. It follows
called the large intestine. a twisting and turning course and ends, many
yards later, at the rectum. In between are a
CD most commonly affects the end of the number of organs that all play a part in process-
small bowel (the ileum) and the beginning ing and transporting food through the body.
of the colon. Crohn’s disease can also affect
the entire thickness of the bowel wall, while The first is the esophagus, a narrow tube that
ulcerative colitis only involves the innermost connects the mouth to the stomach. Food
lining of the colon. Finally, in Crohn’s disease, passes through the stomach and enters the
the inflammation of the intestine can “skip”— small intestine. This is the section where most
leaving normal areas in between patches of of our nutrients are absorbed. The small
diseased intestine. This does not occur in intestine leads to the colon, or large intestine,
ulcerative colitis. In only 10 percent of cases which connects to the rectum.
are there overlapping features of both ulcerative
14
• While Crohn’s disease can affect those from

THE GASTROINTESTINAL any ethnic background, it is more common
(GI) TRACT among Caucasians. However, prevalence and
1 incidence rates among Hispanics and Asians
1 Oral Cavity (mouth)
have recently increased.5,6
2 Esophagus (throat)
2
3 Liver
• Both Crohn’s disease and ulcerative colitis are
diseases found mainly in developed countries,
4 Stomach
more commonly in urban areas rather than
3
4 5 Large Intestine/Colon rural ones, and more often in northern cli-
6 Small Intestine mates than southern ones. However, some of
5 these disease patterns are gradually shifting.
6 7 Rectum
For example, the number of cases of IBD is
8 Anus increasing in developing parts of the world,
7
including China, India, and South America.6,7
8
Figure 1
The genetic connection
The principal function of the colon is to absorb Researchers have discovered that Crohn’s dis-
excess water and salts from waste material ease tends to run in families. In fact, the risk for
(what’s left after food has been digested). It developing IBD is between 1.5 percent and 28
also stores solid waste, converting it to stool, percent for first-degree relatives of an affect-
and excretes it through the anus. ed person.8 While genetic background plays a
clear role, environmental factors such as diet,
When inflammation occurs, the primary func- smoking, lifestyle, pollutants, and others may
tions are affected, including the absorption of impact onset, progression, and relapse of the
water. As a result, diarrhea can be a very com- disease. As such, while family history has a
mon symptom during flares of Crohn’s disease. strong association with increased risk of IBD, it
is currently not possible to confidently predict
which, if any, family members will develop
Who gets Crohn’s Crohn’s disease.9,10
disease?
• On average, people are more frequently
diagnosed with Crohn’s disease between
the ages of 20 and 30, although the disease
can occur at any age and an increased
incidence of pediatric Crohn’s disease has
beenreported globally.1-4
• Males and females appear to be
approximately equal.1
15
What causes Crohn’s large intestine cannot absorb water efficiently.

Both of these factors lead to a progressive
disease? loosening of the stool—in other words, diarrhea.
The damaged intestinal lining may begin pro-
No one knows the exact cause(s) ducing excess mucus in the stool. Moreover,
of the disease ulceration in the lining can also cause bleeding,
leading to bloody stool. Eventually, that blood
Nothing that you did made you get Crohn’s
loss may lead to a low red blood cell count,
disease. You didn’t catch it from anyone. It
called anemia.
wasn’t something that you ate or drank that
brought the symptoms on. Leading a stressful
Most people with Crohn’s disease experience
lifestyle didn’t cause it. So, above all, don’t
urgent bowel movements as well as crampy
blame yourself!
abdominal pain. These symptoms vary from
person to person and may change over time.
What are some of the likely causes? Most
Together, these may result in loss of appetite
experts think there is a multifactorial
and subsequent weight loss. These symptoms,
explanation. This means that it takes a
along with anemia, can also lead to fatigue.
number of factors working in combination
Children with Crohn’s disease may fail to develop
to bring about Crohn’s disease.
or grow properly.
More than 200 genes have now been associ-
Symptoms may range from mild to severe.
ated with IBD, though their exact role is still
Because Crohn’s disease is a chronic disease,
under investigation. It’s likely that a person
patients will go through periods in which the
inherits one or more genes that make him
disease flares up (is active) and causes symp-
or her more susceptible to Crohn’s disease.
toms. In between flares, people may experi-
These genes then lead to an abnormal immune
ence no symptoms at all. These disease-free
response to some environmental triggers.
periods (known as “remission”) can span
Scientists have not yet unequivocally identi-
months or even years, although symptoms
fied specific triggers but the bacteria in the
typically do return at some point.
intestine, part of our microbiome, are a leading
candidate. Other environmental factors (diet,
Inflammation may also cause fistulas to develop.
viruses, stress, smoking, etc.) likely play a role
A fistula is an abnormal connection that leads
as well. In a genetically susceptible individual,
from one loop of intestine to another, or that
whatever the trigger is, it prompts the person’s
connects the intestine to the bladder, vagina,
immune system to “turn on” and launch an
or skin. Fistulas occur most commonly around
attack in the GI system. That is when the in-
the anal area. If this complication arises, you
flammation begins. Unfortunately, the immune
may notice drainage of mucus, pus, or stool
system doesn’t “turn off,” so the inflammation
from this opening.
continues, damaging the digestive tract and
causing the symptoms of Crohn’s disease.
Other complications that may result from
chronic inflammation include strictures
What are the signs and symptoms?
(narrowing of the intestine from scar tissue) or
As the intestinal lining becomes inflamed and abscesses. An abscess is a collection of fluid
ulcerated (small and large sores), the small outside of the intestine that contains bacteria,
bowel loses its ability to absorb nutrients. The intestinal fluid, and pus (white blood cells).
16
Beyond the intestine • Jejunoileitis: Produces patchy areas of

In addition to having symptoms in the GI tract, inflammation in the jejunum (upper half
some people also may experience a variety of of the small intestine).
symptoms in other parts of the body associated
Patterns of disease
with Crohn’s disease. Signs and symptoms of
the disease may be evident in the: • Luminal Crohn’s disease (Inflammatory
Crohn’s disease)
• eyes (redness, pain, and/or changes in vision) Luminal Crohn’s disease refers to Crohn’s
• mouth (sores) disease causing inflammatory changes in
the lining, or wall, of the intestine.
• joints (swelling and pain)
• Approximately 55 percent of patients with
• skin (tender bumps, painful ulcerations, luminal Crohn’s disease are symptom free
and other sores/rashes) or in remission in any given year.
• bones (osteoporosis) • Another 15 percent have low activity of
disease, while about 30 percent experience
• kidney (stones)
high activity.
• liver (primary sclerosing cholangitis and • A patient with luminal Crohn’s disease, who
cirrhosis)—a rare development remains in remission for one year, has an 80
percent chance of staying in remission for
All of these are known as extraintestinal an additional year, while those experiencing
manifestations of Crohn’s disease because they active disease in the past year have a 70
occur outside of the digestive system. In some percent chance of recurrent symptomatic
people, these actually may be the first signs of flare during the next year.
Crohn’s disease, appearing even years before
the bowel symptoms. In others, they may coin- • Fibrostenosing Crohn’s disease
cide with a flare-up of intestinal symptoms. Fibrostenosing Crohn’s disease is characterized
by strictures, or narrowing of the intestine,
Types of Crohn’s disease which can lead to bowel obstructions (block-
The symptoms and potential complications of ages). This disease course in Crohn’s disease
Crohn’s disease differ, depending on what part varies from person to person and from year
of the GI tract is affected. The following are to year. It generally follows a pattern of flares
five types of Crohn’s disease: (when symptoms occur and the condition
worsens) and remissions. This pattern is the
• Crohn’s (granulomatous) colitis: Affects the chronic, relapsing course of Crohn’s disease.
colon only.
• Penetrating Crohn’s disease
• Gastroduodenal Crohn’s disease: Affects Another pattern is known as penetrating
the stomach and duodenum (the first part Crohn’s disease. This results in fistulae, which
of the small intestine). are abnormal connections between the
• Ileitis: Affects the ileum. inflamed intestine and other parts of the
intestine, bladder, skin, or vagina. These
• Ileocolitis: The most common form of Crohn’s fistulae can also occur around the anus and
disease affecting the colon and terminal ileum are termed perianal. The outlook for this type
(the last section of small intestine). of Crohn’s disease depends on the location
and complexity of the fistulae.
17
Most patients with Crohn’s disease have an of inflammation or complications such as

inflammatory pattern early in their disease strictures, fistulae, or abnormal fluid collec-
course. However, many progress to fibroste- tions. The advantage of MRI is that it does
nosing or penetrating disease over time. not involve radiation exposure. However, it
is usually more expensive than CT imaging.
For more information about the management
of symptoms and complications related to In some areas, ultrasonography, using sound
Crohn’s disease, visit the Foundation’s website waves, can detect some of these changes as
at www.crohnscolitisfoundation.org/brochures. well. Ultrasonography for Crohn’s disease is
not widely used in the U.S.
Making the diagnosis For further information about diagnosing

Crohn’s disease, please read our Diagnosing
The path toward diagnosis begins by taking and Monitoring IBD brochure available at
a complete patient and family medical history, www.crohnscolitisfoundation.org/brochures.
including full details regarding symptoms.
A physical examination is also performed.
Questions to ask your
Since a number of other conditions can produce
the same symptoms as Crohn’s disease, your doctor
doctor relies on various medical tests to rule
out other potential causes for your symptoms, It is important to establish good communica-
such as infection. Tests may include: tions with your doctor. Patients will need to
establish a collaborative relationship with all
• Stool tests: Used to exclude infection or their healthcare providers, especially their
to detect inflammation (fecal calprotectin). gastroenterologist, to achieve the best long-
• Blood tests: May detect the presence of term results.
inflammation, abnormal antibodies, anemia,
or nutritional/vitamin deficiencies. It is common to forget to ask some critical
questions during your office visit. Here is a list of
• Colonoscopy and upper endoscopy: Used questions that may be helpful for your next visit:
to look at the lining of your gastrointestinal
tract with a scope or a tube with a camera • Could any condition other than my Crohn’s
and a light at the end. Biopsies can be disease be causing my symptoms?
obtained through these scopes. There is • What tests do I need to have to get to the
also a special miniaturized camera that can root of my symptoms?
be swallowed by the patient and specifically
used to evaluate the small bowel. • Should I have these tests during the time
of a flare-up or on a routine basis?
• Bowel Imaging: Cross-sectional imaging
refers to the use of computerized tomogra- • What parts of my GI tract are affected?
phy (CT) scanning or magnetic resonance • How will I know if my medication needs
imaging (MRI) to evaluate the intestinal tract to be adjusted?
and surrounding structures for the presence
• What happens if I miss taking a dose or if I
stop taking my medication?
18
Treatment
There are very effective treatments available
that may control your Crohn’s disease and even
place it into remission. These treatments work
by decreasing the abnormal inflammation in
the GI system. This permits the system to heal
and will then relieve symptoms of diarrhea,
rectal bleeding, and abdominal pain.
The two basic goals of treatment are to achieve

remission and, once that is accomplished, to
maintain remission. If remission cannot be
established, then the next goal is to decrease
the severity of disease in order to improve
the patient’s quality of life. Some of the same
medications may be used to accomplish this,
• Approximately how long should it take to see but they are given in different dosages and for
some results, or to find out that this may not different lengths of time.
be the right medication for me?
• What are the side effects of the medication? There is no one size fits all treatment for
What should I do if I notice them? everyone with CD. The approach must be
tailored to the individual, because each
• What should I do if the symptoms return? person’s disease is different.
Which symptoms are considered an
emergency? Medical treatment can bring about remission,
• If I cannot schedule a visit right away, are which can last for months to years. However,
there any over-the-counter medication Crohn’s disease activity may flare up at times
options that can assist with my prescribed from the reappearance of inflammation. A dis-
medication? If so, which ones? ease flare may also be triggered from a com-
plication such as a fistula, stricture, or abscess.
• Should I change my diet or take nutritional Flares of Crohn’s disease may indicate that a
supplements? If so, can you recommend a di- change in medication dose, frequency, or type
etitian or any specific nutritional supplements? is needed.
• Do I need to make any other lifestyle changes?
Physicians have been using some medications
• When should I come back for a follow-up for the treatment of Crohn’s disease for many
appointment? years. Others are recent breakthroughs. The
• What are my options if I can’t afford my most commonly prescribed fall into the follow-
medications? ing categories:
• Aminosalicylates: These include medications
that contain 5-aminosalicylic acid (5-ASA).
These medications work by inhibiting certain
pathways that produce substances that cause
19
inflammation. They can work in the lining in people who haven’t responded to other
of the GI tract to decrease inflammation. medications and may take several weeks to
They are thought to be effective in treating months to begin working.
mild-to-moderate flares of Crohn’s disease,
• Biologic therapies: These are protein-based
and useful as a maintenance treatment in
therapies made from living organisms, either
preventing relapses of the disease. Aminosa-
human or animal. These medications are
licylates work best in the colon and are not
antibodies that stop certain proteins in the
particularly effective if the disease is limited
body from causing inflammation. They are
to the small intestine. These are often given
currently offered in an injectable form, or
orally in the form of delayed release tablets
through intravenous infusion (through the
to target the colon, or rectally as enemas or
veins). There are also biologic medications
suppositories.
known as biosimilars. Biosimilars are de-
• Corticosteroids: These medications affect signed to be similar, near identical copies of
the body’s ability to launch and maintain an another already approved biologic therapy,
inflammatory process. In addition, they work known as an originator drug or reference
to keep the immune system in check. Corti- product. They have the same safety and
costeroids are used in people with moderate- effectiveness, and are taken in the same way
to-severe Crohn’s disease. Budesonide, a as the originator drugs.
corticosteroid released primarily at the end
• Antibiotics: Antibiotics may be used when
of the small bowel (distal/terminal ileum), is
infections—such as abscesses—occur in
used for the treatment of mild-to-moderate
Crohn’s disease. They can also be helpful with
Crohn’s disease. Corticosteroids are effective
fistulas around the anal canal and vagina.
for short-term control of disease activity;
however, they are not recommended for
long-term or maintenance use because of Future Therapies: Research advances have
their side effects. If you cannot come off contributed to breakthroughs in the develop-
steroids without a relapse of symptoms, your ment of newer medical options for the treat-
doctor may need to add some other medica- ment of IBD. Further developments may lead
tions to help manage your disease. Because to expanding how currently approved medi-
of their effect on the adrenal glands, steroids cations are used in other diseases, including
cannot be stopped abruptly. Crohn’s disease.
• Immunomodulators: This class of medica- There are many therapies currently under
tions controls or suppresses the body’s im- investigation—for a current, up-to-date list
mune system response, therefore decreasing of all FDA-approved medications for Crohn’s
inflammatory activity. Immunomodulators are disease, please visit the Foundation’s online IBD
generally used in people for whom aminosa-
licylates haven’t been effective or have been
only partially effective. Some immunomodu-
lators are added to make other medications,
such as biologics, work better by preventing
the antibody formation to biologic medi-
cations. They may be useful in reducing or
eliminating the need for corticosteroids. They
may also be effective in maintaining remission
20
Medication guide: www.ibdmedicationguide.org. Crohn’s disease. The safest way to handle

Additional information is available in our Un- over-the-counter medications is to follow the
derstanding IBD Medications and Side Effects guidelines and instructions of your doctor and
brochure at www.crohnscolitisfoundation.org/ pharmacist.
brochures.
For further information about managing
the symptoms of Crohn’s disease, please
Managing your symptoms read our Managing Flares and Other IBD
Symptoms brochure available at
The best way to control Crohn’s disease is www.crohnscolitisfoundation.org/brochures.
by taking medications as prescribed by your
doctor or other healthcare professional.
Other considerations
However, medications may not immediately
get rid of all the symptoms that you are expe- Surgery
riencing. You may continue to have occasional Many individuals with Crohn’s disease respond
diarrhea, cramping, nausea, and fever. well to medical treatment and never need to
undergo surgery. However, between 66 and 75
Even when there are no symptoms, or just percent of people will require surgery at some
minimal ones, it may still seem like a nuisance point during their lives. The overall goal of
to be on a steady regimen of medication. surgery in Crohn’s disease is to conserve bowel
Remember, though, that taking maintenance and return the individual to the best possible
medication can significantly reduce the risk of quality of life.
flares in Crohn’s disease. In between flares, most
people feel quite well and are free of symptoms. Surgery may become necessary when medical
therapies no longer control the disease or to
Talk to your doctor about which over-the- treat complications. For penetrating disease,
counter (OTC) medications you can take surgery may be required to repair a fistula or
to help relieve those symptoms. These may drain an abscess. In most cases, the diseased
include diphenoxylate-atropine (Lomotil®) segment of bowel is removed. This is called a
or loperamide (Imodium®) taken as needed resection. Usually, the two ends of healthy
to control diarrhea. Most anti-gas products bowel are then joined together in a procedure
and digestive aids may also be safe to use, called an anastomosis. While resection and
but you should ask your doctor about these anastomosis may allow many symptom-free
first. To reduce fever or ease joint pain, years, this surgery is not considered a cure for
speak with your healthcare provider about Crohn’s disease because the disease frequently
taking acetaminophen (Tylenol®) rather than recurs at or near the site of repair.
nonsteroidal anti-inflammatory drugs (NSAIDs)
such as aspirin, ibuprofen (Advil®, Motrin®), A stoma may be required when surgery is rec-
and naproxen (Aleve®). NSAIDs may irritate ommended for Crohn’s disease. After surgeons
your digestive system. Many over-the-counter remove the diseased bowel, they may need to
medications can have adverse effects on the re-route the intestine to the skin and attach an
Crohn’s disease itself or interact with some external pouch. If the small bowel is used, it is
of the medications prescribed to treat your called an ileostomy. If the large bowel (colon)
21
is used, it is termed a colostomy. A stoma may There is no single diet or eating plan that will
be required if the amount of disease and/or work for everyone with Crohn’s disease.
inflammation is so severe that an immediate Dietary recommendations must be tailored
anastomosis is not safe. A colostomy is also specifically for you—depending on what part of
required if the rectum is removed. In some in- your intestine is affected and what symptoms
stances, the stoma may be temporary and can you have. Crohn’s disease varies from person
be closed in several months once the severe to person and even changes within the same
inflammation and/or infection is controlled. person over time. What worked for your friend
may not work for you, and even what worked
For further information on surgery and Crohn’s for you last year may not work for you now.
disease, please read our Surgery for Crohn’s
Disease and Ulcerative Colitis brochure There may be times when modifying your diet
available at www.crohnscolitisfoundation.org/ can be helpful, particularly during a flare. Some
brochures. diets may be recommended at different times
by your physician, including:
Diet and Nutrition
• Low-salt diet—Used during corticosteroid
Once the disease has developed, paying therapy to reduce water retention.
attention to your diet may help you reduce
symptoms, replace lost nutrients, and promote • Low-fiber diet—Used to avoid blockages in
healing. Keeping a food diary can be a big help. Crohn’s disease patients with strictures and
It allows you to see the connection between to avoid stimulating bowel movements in CD.
what you eat and the symptoms that may • Low-fat diet—Typically recommended during
follow. If certain foods are causing digestive a flare in Crohn’s disease when fat absorption
problems, then try to avoid them. may become an issue.
• Lactose-free diet—For those who have an
intolerance to dairy products.
• High-calorie diet—For those who experience
weight loss or growth delay.
• Other diets—There are many other diet plans
that have been tried or suggested for man-
agement of Crohn’s disease. These include
gluten-free diet, low FODMAP diet, Specific
Carbohydrate Diet,™ and the Mediterranean
diet. While an individual may benefit from such
a diet, there is no strong evidence to support
recommending these for broad use at this time.
Some patients with IBD may become deficient

in certain vitamins and minerals (including
vitamin B-12, folic acid, vitamin C, vitamin D, iron,
calcium, zinc, and magnesium) or have trouble
ingesting enough food to meet their caloric
needs. Your healthcare provider can identify and
22
correct these deficiencies through vitamin and hydrates; and margarine and oils are sources of
nutritional supplements. fat. A dietary supplement, like a multivitamin,
can help fill the gaps.
Although no specific foods worsen the under-
lying inflammation of Crohn’s disease, certain For more information, you may want
ones may tend to aggravate the symptoms. to talk with a dietitian and read our Diet
Here are some helpful tips: and Nutrition brochure available at
www.crohnscolitisfoundation.org/brochures.
• Reduce the amount of greasy or fried foods in
your diet, which may cause diarrhea and gas.
Complementary and alternative
• Eat smaller meals at more frequent intervals. therapies
• If you are lactose intolerant, limit the amount Some people living with Crohn’s disease look
of dairy products in your diet. If you are not toward complementary and alternative medi-
lactose intolerant, dairy products do not need cines (CAM) to use together with conventional
to be limited. therapies to help ease their symptoms. CAM
therapies may work in a variety of ways. They
• Avoid carbonated beverages if excessive gas may help to control symptoms and ease pain,
is a problem. enhance feelings of well-being and quality of
• Restrict caffeine when severe diarrhea life, and possibly boost the immune system.
occurs, as caffeine can act as a laxative. Speak with your doctor about the best thera-
pies for your situation.
• Bland, soft foods may be easier to tolerate
than spicy foods, although not always. For further information about complementary
• Restricting your intake of certain high-fiber and alternative therapies, view our Complemen-
foods such as nuts, seeds, and raw vegetables tary and Alternative Medicine fact sheet
may decrease your symptoms, especially at www.crohnscolitisfoundation.org/brochures.
if you have a narrowed segment of bowel.
Stress and emotional factors
Maintaining proper nutrition is important in Crohn’s disease affects virtually every aspect
the management of Crohn’s disease. Abdom- of a person’s life. If you have Crohn’s disease,
inal pain and fever can cause loss of appetite you’re bound to have questions about the
and weight loss. Diarrhea can rob the body of relationship between stress and emotional
fluids, minerals, and electrolytes. These are nu- factors and this disease.
trients in the body that must remain in proper
balance for the body to function properly. Although flares are sometimes associated with
stressful events or periods, there is no proof
That doesn’t mean that you must eat certain that stress causes Crohn’s disease. It is much
foods or avoid others. Most doctors recommend more likely that the emotional distress people
a well-balanced diet to prevent nutritional defi- sometimes feel is a reaction to the symptoms
ciency. A healthy diet should contain a variety of of the disease itself. Individuals should seek
foods from all food groups. Meat, fish, poultry, understanding and emotional support from
and dairy products (if tolerated) are sources their families and caregivers. As depression can
of protein; bread, cereal, starches, fruits, and be associated with chronic illness, a doctor may
vegetables (if tolerated) are sources of carbo- recommend medication and/or a referral to a
23
For detailed information about general health-

care maintenance in Crohn’s disease and a
helpful chart for your records, view our General
Healthcare Maintenance fact sheet at
www.crohnscolitisfoundation.org/brochures.
Support
Learning you have Crohn’s disease may be diffi-
cult and stressful. As time goes on, this will not
always occupy the top spot in your mind. In the
meantime, try not to hide your condition from
the people in your life. Discuss it with them and
help them understand what kind of support
you need.
You’ll learn that there are numerous strategies

that can make living with Crohn’s disease easier.
Coping techniques for dealing with the disease

may take many forms. For example, attacks of
diarrhea or abdominal pain may make people
mental health professional. Although formal fearful of being in public places. But that
psychotherapy usually isn’t necessary, some isn’t necessary. All it takes is some practical
people are helped considerably by speaking advanced planning.
with a therapist who is knowledgeable about
You may want to incorporate some of the
IBD or about chronic illness in general. In ad-
following steps into your plans:
dition, the Crohn’s & Colitis Foundation offers
local and online support groups to assist pa- • Find out where the restrooms are in restau-
tients and their families in coping with Crohn’s rants, shopping areas, theaters, and on public
disease and ulcerative colitis. transportation. Smart phone apps are avail-
able to help with locating restrooms.
Please review the list of other resources the • Carry extra underclothing, toilet paper, or
Foundation offers in the “Knowledge and moist wipes when traveling, as needed.
support are power” section at the end of this
• When venturing farther away or for longer
brochure.
periods of time, speak with your doctor first.
Travel plans should include a long-term sup-
General health maintenance
ply of your medication, its generic name in
It is important for Crohn’s disease patients to case you run out or lose it, and the names
continue general health maintenance. While of doctors in the area you will be visiting.
working with your gastroenterologist, also
remember to speak with your primary care Try to go about your daily life as normally as
provider about other important issues, in- possible, pursuing activities as you did before
cluding vaccinations, oral health, vision, heart, your diagnosis. There is no reason for you to sit
breast and prostate screening, and periodic out on things that you have always enjoyed or
blood testing. have dreamed of doing one day.
24
Hope for the future

Investigators all over the world are devoted
to research for patients with Crohn’s disease,
which is promising news when it comes to
the development of new treatments for this
disease. Experts predict that a wave of new
therapies for Crohn’s disease is on the way.
It is becoming increasingly clear that a per-

son’s immune response to intestinal bacteria
plays an important role in IBD. A great deal of
research is currently directed at understanding
the composition, behavior, and precise role
of the gut microbiome in the symptoms of IBD.
Hopefully this new knowledge will uncover new
• Learn coping strategies from others—your
treatments to control or prevent the disease.
local Crohn’s & Colitis Foundation chapter
offers support groups, mentoring programs,
Crohn’s & Colitis Foundation-sponsored
and informational meetings. It helps to share
research has led to huge strides in the fields of
what you know with others too.
immunology, the study of the body’s immune
• Join the Foundation’s free online community defense system; microbiology, the study of
at www.crohnscolitiscommunity.org to get microscopic organisms with the power to cause
the support you need through discussion disease; and genetics. Through the Foundation’s
forums, personal stories, an online support continuing research efforts, much more will be
group, and much more. learned and eventually cures will be found.
• Develop a support network of family and
With the ever-increasing number of clinical trials
friends to help you cope with your disease.
of potential new IBD therapies, there is an even
• Follow your doctor’s instructions about greater need for patient participation. To locate
taking medication (even when you are clinical trials for Crohn’s disease therapies in
feeling well). your area, visit the Foundation’s Clinical Trials
Community at www.crohnscolitisfoundation.
• Bring a family member or friend to your
org or call 888-MY-GUT-PAIN (888-694-8872).
doctor’s appointment for support.
• Maintain a positive outlook. That’s the basic—
and best—prescription!
There’s no doubt that living with this disease

is challenging—you have to take medication
and, occasionally, make other adjustments. It’s
important to remember that most people
with Crohn’s disease are able to lead rich and
productive lives.
25
• I’ll Be Determined
Knowledge and support I’ll Be Determined is here to help patients
are power! and caregivers learn more about Crohn’s
disease and ulcerative colitis, and the choices
Find the answers you need to help control your available to help manage them. The site offers
Crohn’s disease by joining the Crohn’s & Colitis tools and resources, perspectives from
Foundation: IBD patients and experts, and a chance to
connect with others. Learn more by visiting
• Local Education and Support Programs www.ibdetermined.org.
To find programs, support groups, and events in
your area, visit www.crohnscolitisfoundation.
org to find your local chapter.
• “Power of 2”
The Foundation’s “Power of 2” mentorship
program allows patients seeking guidance
on a specific issue to speak with a peer from
within the IBD community who has
traveled a similar path or has had a similar
experience. To find out more, contact
powerof2@crohnscolitisfoundation.org.
• Irwin M. and Suzanne R. Rosenthal IBD • Camp Oasis
Resource Center (IBD Help Center) The Crohn’s & Colitis Foundation’s Camp Oasis
The IBD Help Center is a free service is a co-ed residential summer camp program.
designed to provide patients and caregivers Its mission is to enrich the lives of children
with disease-specific information, guidance, with IBD by providing a safe and supportive
and support. Our Information Specialists can camp community. For more information, visit
be reached by calling 888-MY-GUT-PAIN www.crohnscolitisfoundation.org/camps or
(888-694-8872) Monday through Friday, call the IBD Help Center.
9 a.m. to 5 p.m. Eastern Time, or by e-mailing
• Membership
info@crohnscolitisfoundation.org.
By joining the Crohn’s & Colitis Foundation,
• Crohn’s & Colitis Foundation you’ll get:
Online Community
• Under the Microscope, our newsletter with
The Foundation hosts a free website where
research updates.
patients can get the support they need in
managing their condition. They’ll participate • News, educational programs, and supportive
in discussion boards, share or read personal services from your local chapter.
stories, and much more. The Crohn’s & Colitis
• An “I can’t wait” card (provides help with
Community is waiting for people just like you.
public restroom access).
Join today at www.crohnscolitiscommunity.org.
• To contribute to research to find a cure for
these challenging diseases.
26
The Crohn’s & Colitis Foundation sponsors

nationwide events to increase awareness and
raise funds for mission-critical programs. Here’s
a selection of events. Contact your local chapter
or visit www.crohnscolitisfoundation.org to find
an event nearest you.
• Take Steps is the Crohn’s & Colitis Founda-

tion’s national walk program. Take Steps en-
ables patients and families to raise money for
crucial research and to build awareness about
Crohn’s disease and ulcerative colitis. Visit
www.cctakesteps.org for more information.
• spin4 crohn’s & colitis cures

Use your #power2cure in an exciting new
way to connect with the IBD community—
participate in a high-energy spin4 crohn’s &
colitis cures event near you! With inspiration-
al instructors and fun playlists to keep you
motivated, these indoor cycling relays are
truly a #partyonabike. Teams of up to four
people each ride for a 30-minute session, • Team Challenge
and every teammate receives plenty of swag! Team Challenge is the Foundation’s endurance
The events generate awareness of Crohn’s training and fundraising program. With options
disease and ulcerative colitis, and raise funds including running, walking, triathlon, cycling,
to support groundbreaking IBD research and and hiking, there are unlimited ways to chal-
patient services. Learn more at www.spin4.org. lenge yourself while raising vital funds to cure
these diseases. Each of our training programs
are created by expert coaches to suit all expe-
rience levels, and you’ll be joined by a sup-
portive community of teammates who share
the common goal of ending Crohn’s disease
and ulcerative colitis. For more information
on our destination events, or to participate in
your own event through our Race In Orange
program, visit www.ccteamchallenge.org.
27
Glossary of terms Crohn’s disease: A chronic inflammatory bowel

disease that primarily involves the small and
large intestine, but can affect other parts of
Abscess: A collection of pus from an infection.
the digestive tract as well. Named for Dr. Burrill
Crohn, the American gastroenterologist who
Aminosalicylates: Medications that include
first described the disease in 1932.
compounds containing 5-aminosalicylic acid
(5-ASA).
Diarrhea: Passage of excessively frequent or
excessively liquid stools.
Anastomosis: The surgical connection of
normally separate parts or spaces.
Extraintestinal manifestations: Complications
that occur outside of the gastrointestinal tract.
Antibody: An immunoglobulin (a specialized
immune protein) produced because of the
Fistula: An abnormal connection occurring
introduction of an antigen into the body.
between two loops of intestine or between
the intestine and another nearby structure
Antibiotics: Drugs that may be used when
(such as the bladder, vagina, or skin).
infections occur.
Flare or flare-up: Bouts or attacks of
Antigen: Any substance that prompts an
inflammation with associated symptoms.
immune response in the body.
Gastroenterologist: A doctor who specializes
Anus: Opening at the end of the rectum that
in problems of the gastrointestinal tract.
allows solid waste to be eliminated.
Gastrointestinal (GI) system or tract:
Biologic therapies: Antibodies that bind with
Referring collectively to the esophagus,
specific proteins to block inflammation.
stomach, rectum, anus, and small and large
Bowel: Another name for the intestine. The intestines.
small bowel and the large bowel are the small
Genes: Microscopic building blocks of life that
intestine and large intestine, respectively.
transfer specific characteristics from one
CAM: Complementary and alternative medicine— generation to the next.
a group of diverse medical and healthcare
Immune system: The body’s natural defense
systems, practices, and products that are not
system that fights against disease.
generally considered part of conventional
medicine.
Immunomodulators: Medications that basically
override the body’s immune system so that it
Chronic: Long lasting or long term.
cannot cause ongoing inflammation.
Colon: The large intestine.
Inflammation: A response to tissue injury that
Corticosteroids: Medications that affect causes redness, swelling, and pain.
the body’s ability to begin and maintain an
inflammatory process.
28
Inflammatory bowel diseases (IBD): A term Osteoporosis: A disease in which the bones
referring to a group of disorders, including become porous and prone to fracture.
Crohn’s disease (inflammation anywhere in
the gastrointestinal tract) and ulcerative colitis Rectal: Having to do with the rectum.
(inflammation limited to the colon).
Rectum: Lowest portion of the colon.
Intestine: The long, tube-like organ in the
abdomen that completes the process of Remission: Periods in which symptoms disap-
digestion. It consists of the small and large pear or decrease and good health returns.
intestines.
Resection: Surgical removal of a diseased
Large intestine: Also known as the colon. Its portion of intestine.
primary function is to absorb water and get rid
of solid waste. Small intestine: Connects to the stomach and
large intestine; absorbs nutrients.
Microbiome: The human microbiome is a
community of micro-organisms, like bacteria, Stoma: A surgical opening into the body from
viruses, fungi and archea, that live on the hu- the outside.
man body, especially inside the gastrointestinal
tract. Scientists hypothesize that when the Stricture: A narrowing of a section of intestine
microbiome composition is disturbed, as may caused by scarring.
be the case in IBD, serious health problems can
arise as a result. Ulceration: The process of ulcer formation.
NSAIDs: Nonsteroidal anti-inflammatory Ulcerative colitis: A disease that causes

drugs such as aspirin, ibuprofen, ketoprofen, inflammation of the large intestine (the colon).
and naproxen.
Oral: By mouth.
29
References: Notes:
1. Loftus EV Jr., Schoenfeld P, & Sandborn WJ (2002) The
epidemiology and natural history of Crohn’s disease in
population-based patient cohorts from North America: a
systematic review. Aliment. Pharmacol. Ther. 16(1):51-60.
2. Ruel J, Ruane D, Mehandru S, Gower-Rousseau C

& Colombel JF (2014) IBD across the age spectrum:
is it the same disease? Nat. Rev. Gastroenterol.
Hepatol. 11(2):88-98.
3. Benchimol EI, Fortinsky KJ, Gozdyra P, Van den Heuvel

M, Van Limbergen J & Griffiths AM (2011) Epidemiology
of pediatric inflammatory bowel disease: a systematic
review of international trends. Inflamm. Bowel Dis.
17(1):423-39.
4. Shivashankar R, Tremaine WJ, Harmsen WS & Loftus

EV Jr. (2017) Incidence and prevalence of Crohn’s disease
and ulcerative colitis in Olmsted County, Minnesota
from 1970 through 2010. Clin. Gastroenterol. Hepatol.
15(6):857-863.
5. Nguyen GC, Chong CA & Chong RY (2014) National

estimates of the burden of inflammatory bowel disease
among racial and ethnic groups in the United States.
J. Crohn’s Colitis. 8:288–95.
6. Hou JK1, El-Serag H & Thirumurthi S (2009) Distribu-

tion and manifestations of inflammatory bowel disease
in Asians, Hispanics, and African Americans: a systematic
review. Am. J. Gastroenterol. 104(8):2100-9.
7. M’Koma AE (2013) Inflammatory bowel disease: an

expanding global health problem. Clin. Med. Insights
Gastroenterol. 6:33-47.
8. Santos MPC, Gomes C & Torres J (2018) Familial

and ethnic risk in inflammatory bowel disease. Ann.
Gastroenterol. (1):14-23.
9. Shouval DS & Rufo PA (2017) The role of environmen-

tal factors in the pathogenesis of inflammatory bowel
diseases. JAMA Pediatr. 171(10):999-1005.
10. Ye BD & DMcGovern PB (2016) Genetic variation in

IBD: Progress, clues to pathogenesis and possible clinical
utility. Expert Rev. Clin. Immunol. 12(10):1091–1107.
30
Notes: About the Crohn’s &

Colitis Foundation
Established in 1967, the Crohn’s & Colitis
Foundation is a nonprofit, volunteer-driven
organization dedicated to finding cures
for Crohn’s disease and ulcerative colitis,
and improving the quality of life of children
and adults affected by these diseases.
Since our founding, the Foundation has re-

mained at the forefront of research in Crohn’s
disease and ulcerative colitis. Today, we fund
cutting-edge studies at major medical institu-
tions, nurture investigators at the early stages
of their careers, and finance underdeveloped
areas of research.
In addition, the Crohn’s & Colitis Foundation

provides a comprehensive series of education
programs, printed and online resources, sup-
port services, and advocacy programs to mem-
bers of the IBD community, including patients
and caregivers.
We can help! Contact us at:

888-MY-GUT-PAIN
(888-694-8872)
info@crohnscolitisfoundation.org
www.crohnscolitisfoundation.org
Credits:
Reviewers:
John Hanson, MD and Mark Mattar, MD
Contributors:
Gaylyn Horsley and Jennifer Sareigo
Design & Layout:
Rubicon Design Associates
31
733 Third Avenue

Suite 510
New York, NY 10017
800-932-2423
www.crohnscolitisfoundation.org
The Crohn’s & Colitis Foundation is a nonprofit organiza-

tion that relies on the generosity of private contributions
to advance its mission to cure Crohn’s disease and ulcer-
ative colitis, and to improve the quality of life of children
and adults affected by these diseases.
10/2018
Reprinted with permission from The Crohns’ & Colitis Foundation
32
Studies & Statistics / Diabetes
2020
National Diabetes Statistics Report
Estimates of Diabetes and Its Burden in the United States
This document is intended to provide up-to-date scientific data

and statistics on diabetes and its burden in the United States.
Formerly known as the National Diabetes Fact Sheet, this
consensus document is written primarily for a scientific audience.
CS 314227-A
33
Studies & Statistics / Diabetes
National Diabetes Statistics Report, 2020
INTRODUCTION
The National Diabetes Statistics Report, a periodic publication of the Centers for Disease Control and
Prevention (CDC), provides information on the prevalence and incidence of diabetes and prediabetes,
risk factors for complications, acute and long-term complications, deaths, and costs. These data can help
focus efforts to prevent and control diabetes across the United States. This document is an update of the
2017 National Diabetes Statistics Report and is intended for a scientific audience.
METHODS
New in 2020, this National Diabetes Statistics Report features trends in prevalence and incidence
estimates over time.
The estimates in this document (unless otherwise noted) were derived from various data systems of
CDC, Indian Health Service (IHS), Agency for Healthcare Research and Quality (AHRQ), and US Census
Bureau, and from published research studies. Estimated percentages and total number of people with
diabetes and prediabetes were derived from the National Health and Nutrition Examination Survey
(NHANES), National Health Interview Survey (NHIS), IHS National Data Warehouse (NDW), Behavioral Risk
Factor Surveillance System (BRFSS), United States Diabetes Surveillance System (USDSS), and US resident
population estimates.
Diagnosed diabetes status was determined from self-reported information provided by survey
respondents; for American Indians and Alaska Natives who accessed IHS or tribal health facilities that
submitted medical records data to the IHS NDW, clinical diagnostic codes were also used. Undiagnosed
diabetes was determined by measured fasting plasma glucose or A1C levels. Numbers and rates for
acute and long-term complications of diabetes were derived from the National Inpatient Sample (NIS)
and National Emergency Department Sample (NEDS), as well as NHIS.
For some measures, estimates were not available for certain racial and ethnic subgroups due to small
sample sizes.
An alpha level of 0.05 was used when determining statistically significant differences between groups.
Age-adjusted estimates were calculated among adults aged 18 years or older by the direct method to
the 2000 US Census standard population, using age groups 18–44, 45–64, and 65 years or older. Most
estimates of diabetes in this report do not differentiate between type 1 and type 2 diabetes. However,
as type 2 diabetes accounts for 90% to 95% of all diabetes cases, the data presented here are more likely
to be characteristic of type 2 diabetes, except as noted.
More information about the data sources, methods, and references is available in the Detailed Methods
and Data Sources section.
34
Another random document with
no related content on Scribd:
THE TABLET
OF CONFUCIUS
A PORCELAIN-FRONTED
TEMPLE ON
THE YANGTZE.
The manufacture of porcelain has for centuries made China

celebrated. It may be of interest to refer to the fact that we owe the
existence of our Worcester porcelain works to the attempt made by a
chemist to produce porcelain in England similar to the Chinese. A
great many temples in the Empire province of Sze Chuan have their
fronts and roofs of this porcelain. They are most gorgeous in colour,
and have the appearance of being jewelled.
A PORCELAIN-FRONTED
TEMPLE ON
THE YANGTZE
CHILD EATING RICE
WITH CHOPSTICKS.
The Chinese eat an enormous number of things which the Western

turns from, or which he doesn’t know of. As a rule the Chinese are
good cooks, and the food is wholesome, steaming being the
favourite method. Rice is the staff of life to the masses, who eat it
mixed with fried cabbage or some other flavouring ingredient. It is
seldom eaten alone. So common and universal is rice eating that,
while in French the equivalent of “How do you do?” is “How do you
carry yourself?” and in Italian “How do you stay?” in Chinese the
equivalent is “Have you eaten rice?”
CHILD EATING RICE
WITH CHOPSTICKS
FORT ON
THE PEKING WALL.
City walls are a great feature of the country. The illustration is of a

fort on one of the angles of the wall of Peking, the interest of it lying
in the fact that the guns showing in the embrasures are dummies,
being simply painted wood. Probably the cost of real guns went into
the pockets of some official entrusted with providing the armament of
the fort.
FORT ON
THE PEKING WALL
ANOTHER FORT ON
THE WALL OF PEKING.
This fort is filled with carronades, old guns still kept there, though
absolutely useless, being honeycombed with disuse and rust.
ANOTHER FORT ON
THE WALL OF PEKING
COLOSSAL ASTRONOMICAL
INSTRUMENTS
ON THE PEKING WALL.
Many hundred years old, but as bronze castings they are reckoned
to be amongst the finest in the world. And as astronomical
instruments their results differ very little from those obtained by
astronomers from appliances of the most modern construction.
COLOSSAL ASTRONOMICAL
INSTRUMENTS
ON THE PEKING WALL
CHIEN MUN GATE.
Perhaps the most interesting and picturesque feature of the country

is its city gates. There is a great family likeness between them, the
usual fort-like building surmounting the wall where it is pierced by the
gate. It is not a fort, however. In it are kept the gongs and other
musical instruments by means of which are announced the rising
and the setting of the sun. This is the gate which was blown up by
the Japanese in their recent attack on and entry into the city. It is the
largest and most important gate in Peking.
CHIEN MUN GATE

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Publisher’s Cataloging-In-Publication Data

Title: Autoimmune diseases handbook & resource guide.

Section One: Studies & Statistics About Autoimmune Diseases

Section Two: Types of Autoimmune Diseases

Dressler’s Syndrome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 313

Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 346

Support Groups & Hotlines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 400

Section Three: Appendixes

Autoimmune Diseases Handbook & Resource Guide combines valuable, easy-to-understand

Section One: Studies & Statistics About Autoimmune Diseases

Section Two: Types of Autoimmune Diseases

Section Three: Medication List and Indexes

Two Free Years of Online Access

Autoimmunity may be rising in the United States

In a study (https://www.ncbi.nlm.nih.gov/pubmed/32266792) published April 8 in

and how to prevent them," added Miller.

Immunofluorescent staining of human cells

Concern regarding adolescents

1988-1991: 11.0%, or 22 million affected individuals.

Zeldin also leads the NIEHS Environmental

The study relied on individuals participating in NHANES (https://www.cdc.gov/nchs/nhanes/index.htm) , a research

Autoimmune Diseases and Your Environment

PO Box 12233 • Research Triangle Park, NC 27709 National Institutes of Health

April 2020 Printed on recycled paper

National Institute of Environmental Health Sciences

For more information on the

GENERAL HEALTHCARE MAINTENANCE

Periodic Blood Testing

Blood Pressure Screening

Healthcare Maintenance Chart

Reprinted with permission from The Crohns’ & Colitis Foundation

What’s Inside Understanding your

What is Crohn’s disease? colitis and Crohn’s disease, a condition called

• While Crohn’s disease can affect those from

What causes Crohn’s large intestine cannot absorb water efficiently.

Beyond the intestine • Jejunoileitis: Produces patchy areas of

Most patients with Crohn’s disease have an of inflammation or complications such as

Making the diagnosis For further information about diagnosing

The two basic goals of treatment are to achieve

Medication guide: www.ibdmedicationguide.org. Crohn’s disease. The safest way to handle