Emergency Preparedness Kit

EMERGENCY
PREPAREDNESS KIT
This patient has Marfan syndrome or a related disorder, which places

him/her at up to 250 times greater risk for aortic dissection than the
general population. DO NOT send this person home until the possibility
of aortic dissection is ruled out.
Patient Name:
This kit is your tool to help you be prepared in the event of an emergency. We suggest
putting the completed packet in a brightly colored envelope or folder so it is easy to find.
At home, keep it near the door so it is handy for Emergency Medical Services (EMS) and
perhaps tack it up on the wall at work. Also provide a copy of this packet to your Power of
Attorney and Healthcare Proxy. Portable USB drives can hold all this information and can
be carried on a key chain. Some medical alert services have these drives available with
their logo or you can purchase them in any office supply store.
Many people put emergency contact information in their cell phone led under ICE (In Case
of Emergency). Use ICE1, ICE2 and so on. EMS people are trained to look for this on your cell
phone.
MARFAN.ORG | 800-8-MARFAN EXT. 126 | SUPPORT@MARFAN.ORG
EMERGENCY PREPAREDNESS KIT
CHECKLIST
We recommend that you complete these documents so they are available in case of an
emergency. Remember to update your information regularly.
Included
o
o
o
o
o
o
o
o
o
Item
Last Updated
Personal Information Form
Medical History
Doctor(s) Information
Insurance Information
Family Medical History
Power of Attorney (sample included under Legal Information, below)
Healthcare Proxy (sample included under Legal Information)
Living Will (sample included under Legal Information)
Do Not Resuscitate Order (sample included under Legal Information)
Include a copy of the most recent version of each of the following from your doctor
o
o
o
o
ECHO Tape/CD with Written Report
MRI Films with Written Report
CT Films with Written Report
Blood Work Results
Other resources
o
o
o
o
o
Marfan Syndrome: Basic Facts
Fact Sheet for Paramedics and Emergency Medical Technicians
Legal Information
Medical Alert Bracelet Information
Emergency Alert Card
PERSONAL INFORMATION
First Name:
Last Name:
Date of Birth:
Soc.Sec.No.:
Gender:
o Male
o Female
Marital Status:
Contact Information
Home Address:
City:
State:
Home Phone:
Work Phone:
Cell Phone:
Email:
Occupation:
Employer:
Zip:
Work Address:
City:
State:
Zip:
Health-related Information
Height:
Weight:
Normal Blood Pressure:
Blood Type:
Resting Heart Rate:
o per Day
Alcohol Consumption (number of drinks consumed):
o per Week
Smoking: o Non Smoker o 1 pack or less/week o 23 packs/week o 1 pack/day o More than 1 pack/day
Language Information
Do you need an interpreter?
Language spoken at home:
o Yes
o No
If you need an interpreter and the hospital is temporarily unable to provide one, who can they contact to
provide assistance?
Name:
Work Phone:
Home Phone:
Cell Phone:
Emergency Contacts
Contact 1 First Name:
Last Name:
Address:
Relationship:
City:
State:
Home Phone:
Work Phone:
Cell Phone:
Contact 2 First Name:
Last Name:
Address:
Relationship:
City:
State:
Home Phone:
Work Phone:
Zip:
Zip:
Cell Phone:
Page 1
MEDICAL HISTORY
First Name:
Last Name:
Diagnosis
What condition do you have?
o Marfan Syndrome
o Related Disorder Specify:
Age at diagnosis:
Current Medications (include vitamins/supplements)

1. Name:
Dosage:
Reason:
Schedule:
2. Name:
Dosage:
Reason:
Schedule:
3. Name:
Dosage:
Reason:
Schedule:
4. Name:
Dosage:
Reason:
Schedule:
If you have additional medications, please list them on page 3 of this form.
Allergies
1.
4.
2.
5.
3.
6.
Cardiac History (Heart)

What cardiac issues do you have (e.g., mitral valve prolapse, bicuspid aortic valve or aortic aneurysm/dissection)?
Please attach most recent imaging studies.
Ocular History (Eyes)

What ocular issues do you have (e.g., retinal detachment, strabismus or cataracts)?
Orthopedic History (Bones & Joints)

What skeleton and joint issues do you have (e.g., scoliosis, protrusio acetabulae or kyphosis)?
Page 2
EMERGENCY PREPAREDNESS KIT: MEDICAL HISTORY
MEDICAL HISTORY
First Name:
Last Name:
Recent Surgeries /Procedures

What surgeries/procedures have you had (e.g., aortic repair, pectus surgery, eye surgery)?
1. Surgery/Procedure:
Date:
Location:
Doctor who performed surgery:
Doctors phone:
Date:
Location:
Doctors phone:
Date:
Location:
Doctors phone:
Date:
Location:
Doctors phone:
Date:
Location:
Doctors phone:
Date:
Location:
Doctors phone:
Date:
Location:
Doctors phone:
Date:
Location:
Doctors phone:
If you have additional surgeries/procedures, please list them on page 4 of this form.
Page 3
MEDICAL HISTORY
First Name:
Last Name:
Additional Current Medications (include vitamins/supplements)

5. Name:
Dosage:
Reason:
Schedule:
6. Name:
Dosage:
Reason:
Schedule:
7. Name:
Dosage:
Reason:
Schedule:
8. Name:
Dosage:
Reason:
Schedule:
9. Name:
Dosage:
Reason:
Schedule:
10. Name:
Dosage:
Reason:
Schedule:
11. Name:
Dosage:
Reason:
Schedule:
12. Name:
Dosage:
Reason:
Schedule:
13. Name:
Dosage:
Reason:
Schedule:
14. Name:
Dosage:
Reason:
Schedule:
15. Name:
Dosage:
Reason:
Schedule:
Page 4
MEDICAL HISTORY
First Name:
Last Name:
Additional Recent Surgeries /Procedures

What surgeries/procedures have you had (e.g., aortic repair, pectus surgery, eye surgery)?
Date:
Location:
Doctors phone:
Date:
Location:
Doctors phone:
Date:
Location:
Doctors phone:
Date:
Location:
Doctors phone:
Date:
Location:
Doctors phone:
Date:
Location:
Doctors phone:
Date:
Location:
Doctors phone:
Page 1
DOCTOR(S) INFORMATION
First Name:
Last Name:
Primary Care Physician

First Name:
Last Name:
Address:
City:
Oce Phone:
State:
Pager:
Zip:
Fax:
Cardiologist
First Name:
Last Name:
Address:
City:
Oce Phone:
State:
Pager:
Zip:
Fax:
Ophthalmologist
First Name:
Last Name:
Address:
City:
Oce Phone:
State:
Pager:
Zip:
Fax:
Orthopedist
First Name:
Last Name:
Address:
City:
Oce Phone:
State:
Pager:
Zip:
Fax:
Geneticist
First Name:
Last Name:
Address:
City:
Oce Phone:
State:
Pager:
Zip:
Fax:
Other Specialist
First Name:
Last Name:
Medical Specialty:
Address:
City:
Oce Phone:
State:
Pager:
Zip:
Fax:
If you have additional doctors, please list them on page 2 of this form.
Page 2
EMERGENCY PREPAREDNESS KIT: DOCTOR(S) INFORMATION
DOCTOR(S) INFORMATION
First Name:
Last Name:
Other Specialist
First Name:
Last Name:
Address:
City:
Oce Phone:
State:
Pager:
Zip:
Fax:
Other Specialist
First Name:
Last Name:
Address:
City:
Oce Phone:
State:
Pager:
Zip:
Fax:
Other Specialist
First Name:
Last Name:
Address:
City:
Oce Phone:
State:
Pager:
Zip:
Fax:
Other Specialist
First Name:
Last Name:
Address:
City:
Oce Phone:
State:
Pager:
Zip:
Fax:
Other Specialist
First Name:
Last Name:
Address:
City:
Oce Phone:
State:
Pager:
Zip:
Fax:
Other Specialist
First Name:
Last Name:
Medical Specialty:
Address:
City:
Oce Phone:
State:
Pager:
Zip:
Fax:
INSURANCE INFORMATION
First Name:
Last Name:
Primary Health Insurance

Type of Policy:
o EPO
o HMO
Authorization required: o Yes o No
o PPO
o POS
o Other, please specify:
Authorization No.:
Eective Date:
Insurance Company:
Address:
Phone:
City:
State:
Subscriber:
o Self
o Spouse
Zip:
Subscriber First Name:
Subscriber Last Name:
Subscriber ID Number:
Subscriber Date of Birth:
Subscriber Employer:
Employer Address:
Group number:
Address:
Phone:
City:
State:
Zip:
Secondary Health Insurance

Type of Policy:
o EPO
o HMO
Authorization required: o Yes o No
o PPO
o POS
Authorization No.:
Eective Date:
Insurance Company:
Address:
Phone:
City:
State:
Subscriber:
o Self
o Spouse
Zip:
Subscriber First Name:
Subscriber Last Name:
Subscriber ID Number:
Subscriber Date of Birth:
Subscriber Employer:
Employer Address:
Group number:
Address:
Phone:
City:
State:
Zip:
FAMILY MEDICAL HISTORY

First Name:
Last Name:
Father
Mother
o Aortic Dissection
o Aortic Dissection
o Blood Disorder (e.g., anemia)
o Asthma
o Congestive Heart Failure
o COPD (chronic obstructive pulmonary disease)

o Coronary Artery Disease
o Diabetes
o Asthma

o Diabetes
o Malignancy
o Malignancy
o Neuromuscular Weakness
o Obstructive Sleep Apnea
o Pancreatitis
o Pancreatitis
o Peripheral Artery Disease
o Renal Dysfunction
o Renal Dysfunction
o Seizures
o Seizures
o Thyroid Disease
o Thyroid Disease
o Other (please specify):
Grandparents
Other Relatives
o Aortic Dissection
o Aortic Dissection
o Asthma

o Diabetes
o Malignancy
o Pancreatitis

o Renal Dysfunction
o Seizures
o Thyroid Disease
o Asthma

o Diabetes
o Malignancy
o Pancreatitis

o Renal Dysfunction
o Seizures
o Thyroid Disease
Page 1
FACT SHEET FOR PARAMEDICS AND

EMERGENCY MEDICAL TECHNICIANS
Marfan Syndrome and Aortic Dissection
What is Marfan syndrome?
Marfan syndrome is a life-threatening genetic disorder, and an early, accurate diagnosis is

essential, not only for people with Marfan syndrome, but also for those with related disorders.
Marfan syndrome aects our connective tissue, which helps to hold the bodys cells and tissues
together. It also regulates how our bodies grow. Knowing the signs of Marfan syndrome can
save lives. Our community of experts estimates that nearly half of the people who have
Marfan syndrome don't know it. Without proper diagnosis and treatment, they are at high
risk for aortic dissection and sudden death. Some features of Marfan syndrome are easier to
see than others. These include long arms, legs, and ngers; tall and thin body type; a curved
spine; sunken or protruding chest; exible joints; at feet; crowded teeth; and unexplained
stretch marks on the skin. Harder-to-detect signs include heart problems, especially related to
the aorta, the large blood vessel that carries blood away from the heart. Other signs include
sudden collapse of a lung and eye problems, including severe nearsightedness, dislocated
lens, detached retina, early glaucoma, and early cataracts.
What is aortic dissection?
One of the primary features of Marfan syndrome, as well as certain related disorders, is a
fragile aorta which is prone to dissection. An aortic dissection is a tear involving the inner
layer of the aortic wall, which allows blood to enter and creates a separation of the inner and
outer layers of this vessel. Dissection can lead to a weakening of the outer wall, resulting in
rupture or aneurysm formation; occlusion of aortic branch vessels causing myocardial
infarction, pericardial tamponade, stroke, kidney failure, bowel ischemia, paraplegia or limb
ischemia; and disruption of the aortic valve, resulting in valvular insuciency and cardiac
failure.
Why is emergency diagnosis and treatment of aortic dissection an important issue?
An aortic dissection that remains untreated will ultimately lead to a fatal rupture. In the absence
of urgent surgical intervention, the fatality rate associated with acute aortic dissection that
originates near the heart is very high. This makes it essential to evaluate symptoms that could
be related to a dissection.
What are the symptoms of aortic dissection?
The patient with an aortic dissection usually complains of severe pain, most often in the
chest (front, back, or both), and commonly between the shoulder blades. Occasionally, the
pain may be reported as being in the upper abdomen (if the tear begins in that part of the
aorta). The patient may describe the pain as ripping, tearing, or sharp like a knife. It may also
be described as pleuritic.
Symptoms and signs of shock are ominous ndings, and indicate that the dissection has
progressed to the point at which tissue perfusion is compromised. However, dissections can
EMERGENCY PREPAREDNESS KIT:

FACT SHEET FOR PARAMEDICS AND EMERGENCY MEDICAL TECHNICIANS
Page 2
also cause a variety of other symptoms in the extremities: pain, pallor, pulselessness, parasthesias; and paralysis (the 5 Ps). There may also be classic features of Marfan syndrome,
such as disproportionately long arms, legs ngers and toes; pigeon breast (in which the
breast bone protrudes forward); funnel chest (in which the breast bone caves inward); and
marked curvature of the spine. Rarely, if the dissection compromises blood ow to the spinal
cord, there may be weakness in one or both legs or arms. In addition, neurologic events that
would seem due to a stroke or transient ischemic attack (TIA) may be due to a dissection.
Important points of the physical examination, patient history, and assessment that raise the
possibility of an aortic dissection:
Take note if the patient tells you that he/she has an aneurysm, Marfan syndrome, or
family history of Marfan syndrome
NOTE: This should alert the EMS provider to consider rapid transport with treatment
provided en route.
The patient may describe symptoms of shock.
The patient may describe pain or paresthesias in extremities.
The patient may describe the pain in the front or back of the chest or upper abdomen
as ripping, tearing, or sharp like a knife. At times, it is described as pleuritic.
During the physical examination, the following ndings may be noted:
signs of shock
pallor, pulselessness, paralysis in extremities
disproportionately long arms, legs, ngers and toes
pigeon breast (in which the breast bone protrudes outward)
funnel chest (in which the breast bone prominently caves inward)
marked curvature of the spine.
EMERGENCY CARE FOR AORTIC DISSECTION

Basic Life Support (BLS) Advanced Life Support (ALS)
Follow the local or regional treatment and transport standards for SHOCK.
For additional information, contact:

The Marfan Foundation
22 Manhasset Ave.
Port Washington, NY 11050
800-8-MARFAN
www.marfan.org
Page 1
LEGAL INFORMATION
PLEASE NOTE: This section and the sample forms included are NOT intended to be treated as legal advice.
Laws pertaining to healthcare matters and patients rights and wishes vary greatly from state to state. The
Marfan Foundation strongly encourages you to contact a legal professional in your state for full and complete
guidance and legal advice on these complicated and sensitive issues, both in general and particularly before
completing any of the forms included in this packet.
The legal, ethical, and psychological issues surrounding serious illness and death arent easy
to discuss. But its far easier on everyone if you have a healthcare proxy, durable power of
attorney, living will, and other advance directives in place before youre faced with a serious
accident or illness. If you dont have these documents prepared in advance, you may nd
yourself in a situation in which youre unable to communicate your wishes regarding the
extent of treatment eorts, such as resuscitation and life-support machines. The following
pages are provided to help you communicate your wishes should you be unable to do so in
the event of an emergency. If you have any other questions please feel free to contact us at
(800) 8-MARFAN.
Lawyers Name:
Law Firm:
Address:
City:
State:
Zip:
Phone:
What Is a Power of Attorney?

A power of attorney is a document in which you state that you give someone else (usually a
relative or friend) the authority to make certain decisions and act on your behalf. The person
to whom you give these powers is called an agent or attorney-in-fact. You are called the
principal. Just because the word attorney is used does not mean that the person you give
authority to has to be a lawyer.
Executing a power of attorney does not mean that you can no longer make decisions; it just
means that another person can act for you also. For example, you may be hospitalized for a
brief period of time and need someone to deposit your checks in the bank or pay your bills.
As long as you are capable of making decisions, the other person must follow your directions.
You are simply sharing your power with someone else. You can revoke the agent's authority
under the power of attorney at any time if you become dissatised with what they are doing.
A power of attorney ends upon your death. Thereafter, your will, or the law of intestacy, governs
the handling of your estate. A power of attorney document is not a substitute for a will.
Copyright, 2005 Legal Services for the Elderly
EMERGENCY PREPAREDNESS KIT: LEGAL INFORMATION
Page 2
What Is a Healthcare Proxy?

A healthcare proxy is a written document used by any competent person to authorize another
person, usually a family member, to make healthcare decisions if the person who signs the
proxy becomes unable to do so.
When you complete a healthcare proxy, you can either give complete authority to your
proxy to make all decisions regarding your healthcare, or you can give specic instructions
to the person you designate regarding specic issues (such as your desire to have your
breathing articially maintained by medical equipment, etc.).
Why do I need a healthcare proxy?
Without a healthcare proxy, your doctor may be required to provide you with medical
treatment that you would have refused if you were able to do so. For example, your doctor
may be required to provide you with artificial nutrition and hydration, a respirator, or CPR,
even though you are in a coma with no hope of recovery, or are terminally ill.
When does it take eect?
The healthcare proxy becomes eective only when you become unable to make decisions,
as determined by a physician. Until then, you continue to be in charge of making your own
healthcare decisions. It can be revoked orally, and you always have the right while competent
to sign a new healthcare proxy.
How is a healthcare proxy dierent than a power of attorney?
A healthcare proxy is different than a power of attorney. A power of attorney primarily

authorizes the person you designate to make financial decisions for you. It cannot be used
to make healthcare decisions. You must complete a healthcare proxy in order to have an
agent make healthcare decisions when you are not able.
What is the dierence between a healthcare proxy and a living will?
A healthcare proxy is also dierent than a living will, although each serves the same purpose
of allowing you to make decisions in advance about your healthcare. A living will is a document
that you sign in advance in which you specically set forth your decisions about healthcare
treatment. Unlike the healthcare proxy, however, it does not authorize you to appoint an agent
to make decisions that you did not anticipate when you completed the living will. The healthcare proxy provides specic instructions and also designates an agent to make decisions
when there are events you did not anticipate.
What Is a Living Will?

Many people recognize that death is as much a part of the life cycle as birth, growth, maturity,
and old age. Some states allow persons to manage their nal illness through a living will, a
legal document of healthcare instructions. In some states this document simply provides
directions and instructions to your doctor. In other states, it also permits you to appoint a
healthcare proxya person who can make decisions for you when you are not able to do so
because of illness or incapacitation. Some states call this document a living will while others
call it an advance directive. It may include a directive to physicians to withhold or withdraw
life-sustaining procedures under certain circumstances.
Page 3
A living will or advance directive is eective from the date it is executed until you die or until
the directive is revoked. If more than one living will or advance directive has been executed,
the last one to be executed will control.
Living wills vary between states.
Page 4
Healthcare Proxy (SAMPLE)

Durable Power of Attorney for Healthcare
I, __________________________(your name), hereby appoint ________________________
(Name, home address, telephone number) as my healthcare agent to make any and all
healthcare decisions for me, except to the extent that I state otherwise. This proxy shall take
eect when and if I become unable to make my own healthcare decisions.
Optional instructions: I direct my agent to make healthcare decisions in accordance with my
wishes and limitations as stated below, or as he or she otherwise knows. I have discussed
with my healthcare proxy my wishes regarding articial hydration and nutrition. (Attach additional pages if necessary.
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
(Unless your agent knows your wishes about articial nutrition and hydration feeding tubes,
your agent will not be allowed to make decisions about articial nutrition and hydration.)
Name of substitute or fill-in agent if the person I appoint above is unable, unwilling or
unavailable to act as my healthcare agent: _______________________________________
(Name, home address, telephone number)
Unless I revoke it, this proxy shall remain in eect indenitely, or until the date or conditions
stated below.
This proxy shall expire (specify date or conditions, if desired): ________________________
Signature __________________________________________ Date ___________________
Address ____________________________________________________________________
Statement by Witness (must be 18 or older. Witness cannot be the person chosen as the
healthcare proxy.): I declare that the person who signed this document is personally known
to me and appears to be of sound mind and acting on his or her own free will. He or she
signed (or asked another to sign for him or her) this document in my presence.
Witness 1 name (print) __________________________ Signature _____________________
Address ____________________________________________________________________
Witness 2 name (print) __________________________ Signature _____________________
Address ____________________________________________________________________
COPIES OF THIS FORM SHOULD BE GIVEN TO YOUR HEALTH CARE PROXY, YOUR
DOCTOR AND YOUR ATTORNEY.
KEEP AN EXTRA COPY FOR YOUR RECORDS.
PLEASE NOTE: This form is provided as an example, it is not intended to provide legal advice and should not
be completed without the advice and assistance of an attorney in your state who is generally knowledgeable
in matters relating to healthcare and patients rights.
Page 5
Non-Hospital Order Not to Resuscitate (SAMPLE)
Persons Name:
Date of Birth:
DO NOT RESUSCITATE THE PERSON NAMED ABOVE.
Physicians Name (please print):

Physicians Signature:
License Number:
Date:
It is the responsibility of the physician to determine, at least every 90 days, whether this
order continues to be appropriate, and to indicate this by a note in the persons medical
chart. The issuance of a new form is NOT required, and under the law this order should be
considered valid unless it is known that it has been revoked. This order remains valid and
must be followed, even if it has not been reviewed within the 90 day period.
Adapted from the New York State Department of Health
PLEASE NOTE: This form is provided as an example, it is not intended to provide legal advice and should not
be completed without the advice and assistance of an attorney in your state who is generally knowledgeable
in matters relating to healthcare and patients rights.
MEDICAL ALERT BRACELET

Another Tool for Ensuring Correct Emergency Care
People with Marfan syndrome and related disorders know they are at increased risk of aortic
dissection. Often, they are more knowledgeable about their condition than the healthcare
providers who treat them. This can be problematic and, in fact, life-threatening in the hospital
emergency department when quick diagnosis and treatment of aortic dissection is critical to
saving an individuals life.
We strongly urge people with Marfan syndrome and related disorders to wear a medical
alert bracelet to safeguard their own health. Check with your physician to determine the
appropriate wording for your bracelet.
Although there are many companies that oer this service, one of the most well-known is
MedicAlert. For more information about MedicAlert, call 888-633-4298 or visit
MedicAlert.org.
EMERGENCY ALERT CARD

INSTRUCTIONS
1.
Print this page on a color printer at actual size (check printer settings so it does not scale up or down).
2. Cut along perimeter indicated by GRAY dotted lines.

3. Fold in half as indicated by BLUE lineS.
4. Fold in thirds as indicated by PINK lines.
The final card should measure 3 x 2.5 and fit in your wallet.

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EMERGENCY

This patient has Marfan syndrome or a related disorder, which places

MARFAN.ORG | 800-8-MARFAN EXT. 126 | SUPPORT@MARFAN.ORG