DESCRIPTION

Moebius Syndrome is a very rare disorder characterized by lifetime

facial paralysis. People with Moebius Syndrome can not smile or
frown. In many cases, they can not blink and have no lateral eye
movement. The syndrome can also be associated with physical
problems in other parts of the body.

The sixth and seventh cranial nerves are not fully developed,
resulting in eye muscle and facial paralysis. Movements of the face
such as blinking, lateral eye movements, and facial expressions are
controlled by these nerves. Many of the other may also be affected.

SYMPTOMS

The most apparent symptoms are related to facial expressions and

function. In newborn infants, the first sign is an impaired ability to
suck. Excessive drooling and crossed eyes may be present. In
addition, there can be deformities of the tongue and jaw, and even of
some limbs, including club foot and missing or webbed fingers.
Most children have low muscle tone, particularly of the upper body.

Symptoms May Include:

Lack of facial expression; inability to smile
Feeding, swallowing and choking problems (sometimes tubes are
necessary to thrive; be very careful with solid foods)
Keeping head back to swallow
Eye sensitivity due to inability to squint (sunglasses and hats are
very helpful)
Motor delays due to upper body weakness
Absence of lateral eye movement
Absence of blinking
Strabismus (crossed eyes, correctable with surgery)
Drooling
High palate
Short or deformed tongue
Limited movement of tongue
Submucous cleft palate
Teeth problems
Hearing problems (due to fluid in ears, tubes are sometimes
necessary)
Speech difficulties (especially with closed mouth sounds and sounds
involving the lips)
Minor mid-line anomalies

Although they crawl and walk later, most Moebius Syndrome

children eventually catch up. Speech problems often respond to
therapy, but may persist due to impaired mobility of the tongue and
lips. As children get older, the lack of facial expression and an
inability to smile become the dominant visible symptoms.

Moebius Syndrome is sometimes accompanied by Pierre Robin

Syndrome and Poland's Anomaly.

CAUSE

Children are born with it. Although it appears to be genetic, its

precise cause remains unknown and the medical literature presents
conflicting theories. It affects boys and girls equally, and there
appears to be, in some cases, an increased risk of transmitting the
disorder from an affected parent to a child. Although no prenatal test
for Moebius Syndrome is currently available, individuals may
benefit from genetic counseling.

TREATMENT

Infants sometimes require special bottles (ie ) or feeding tubes to

maintain sufficient nutrition. Strabismus (crossed eyes) is usually
correctable with surgery. Children with Moebius Syndrome can also
benefit from physical and speech therapy to improve their gross
motor skills and coordination, and to gain better control over
speaking and eating. Limb and jaw deformities may often be
improved through surgery. In addition, In some cases, nerve and
muscle transfers to the corners of the mouth have been performed to
provide an ability to smile.

RESEARCH & AWARENESS

One of the most frustrating aspects of coping with Moebius

Syndrome is the surprising lack of awareness among physicians and
nurses. It occurs so infrequently that many children go undiagnosed
for months and sometimes years after birth. Parents and those
affected spend a lot of time and emotional energy explaining and re-
explaining this rare condition.

The rarity of Moebius Syndrome becomes, in effect, an additional

complication of the disorder. Because so few members of the
professional and lay public have even heard of Moebius Syndrome,
medical and social support, as well as reimbursement from insurance
companies, are severely limited.

This lack of support services puts additional burdens on individuals

and their families in their attempts to cope with Moebius Syndrome.
Lack of awareness also plays a role in limiting research into
potential treatments and cures for Moebius Syndrome.

The Moebius1.org site cannot change this situation over night. But,
with your help we can begin to take the actions that produce a
 quality resource and support center here on the Internet. Nothing is
more frustrating than to need information for your child and find
little or nothing available. Please take the time to participate in the
various sections of this site as you feel comfortable.

Visual Conditions » Rare Conditions » Face Blindness: Prosopagnosis

http://mskathy.proboards30.com/index.cgi?board=rare&action=display&thread=1161955463
Face Blindness: Prosopagnosis
Post by Ms. Kathy on Oct 27, 2006, 7:24am

This is a very interesting neurological condition. I have posted only part of the article which is continued
at the link at the end.

Face Blind
They can see your eyes, your nose, your mouth – and still not recognize your face. Now scientists say
people with prosopagnosia may help unlock some of the deepest mysteries of the brain.
By Joshua Davis

BILL CHOISSER WAS 48 when he first recognized himself. He was standing in his bathroom, looking in
the mirror when it happened. A strand of hair fell down – he had been growing it out for the first time.
The strand draped toward a nose. He understood that it was a nose, but then it hit him forcefully that it
was his nose. He looked a little higher, stared into his own eyes, and saw … himself.

For most of his childhood, Choisser thought he was normal. He just assumed that nobody saw faces. But
slowly, it dawned on him that he was different. Other people recognized their mothers on the street. He
did not. During the 1970s, as a small-town lawyer in the Illinois Ozarks, he struggled to convince clients
that he was competent even though he couldn't find them in court. He never greeted the judges when
he passed them on the street – everyone looked similarly blank to him – and he developed a reputation
for arrogance. His father, also a lawyer, told him to pay more attention. His mother grew distant from
him. He felt like he lived in a ghost world. Not being able to see his own face left him feeling hollow.

One day in 1979, he quit, left town, and set out to find a better way of being in the world. At 32, he
headed west and landed a job as a number cruncher at a construction firm in San Francisco. The job
isolated him – he spent his days staring at formulas – but that was a good thing: He didn't have to talk
to people much. With 1,500 miles between him and southern Illinois, he felt a measure of freedom. He
started to wear colorful bandannas, and he let his hair grow. When it got long enough, he found that it
helped him see himself. Before that, he'd had to deduce his presence: I'm the only one in the room, so
that must be me in the mirror. Now that he had long hair and a wild-looking scarf on his head, he could
recognize his image. He felt the beginnings of an identity.

It gave him the confidence to start seeing doctors. He wanted to know if there was something wrong
with his brain. His vision was fine, they told him – 20/20. One doctor suggested he might have
emotional problems and referred him to a psychiatrist. In the medical literature, there were a few
reports of head-injury and stroke victims who'd lost their ability to recognize faces. No one, as far as the
doctors knew, had ever been born with the condition.

Conventional medicine, in other words, got him nowhere. So Choisser posted a message about his
experiences on a Usenet group devoted to people with neurological problems. His subject line was
"Trouble Recognizing Faces." After a few months, in late 1996, he received a solitary reply. "Hello, Bill,"
the email began, "I read what you wrote, and I think I have what you have."

BRAD DUCHAINE WAS SO LOADED, he didn't realize he was plummeting to the ground. It was his 27th
birthday party and the handsome Wisconsin native had been trying to have a good time. He'd had more
than a few beers, grappled onto the roof to enjoy the beautiful Santa Barbara, California, sky, and fallen
asleep. Now, inexplicably, he was falling. He smashed into the concrete driveway and his hip shattered.
Luckily, the beer dulled the pain. He clawed his way to the living room and fell asleep among a few other
unconscious revelers. Though no one knew it at the time, this guy – passed out, busted up, bleeding on
the floor – was going to have a lasting impact on neuroscience.

Duchaine had started out enjoying himself too much as an undergrad and nearly flunked out of two
colleges. He tried again at Marquette University in Milwaukee, and this time pulled it together. In the
cold, boring Midwest nights, he settled down and did well, graduating summa cum laude in 1995. That
got him into the cognitive psychology PhD program at UC Santa Barbara.
But the fall off the roof two years into his PhD coincided with a crack in his confidence. His dissertation
was in shambles. He hadn't been able to find a suitable topic and was playing videogames until his
thumbs hurt. Did he really think he could succeed as a neuroscientist? His parents were both midlevel
managers at a paper company back in Wisconsin. Community college instructor was a more realistic
goal.

But when Duchaine's parents visited their son in the summer of 1998, he didn't tell them any of this.
The couple had invited an old friend to dinner at the Shoreline Beach Café, a seaside restaurant with
tables right on the sand, and it didn't seem like the right time to reveal his doubts. Instead, over
appetizers, talk turned to a presentation on unusual neurological cases that Duchaine had given to
undergraduates earlier in the day. He was especially fascinated by a study of people who'd been hit on
the head and lost their sense of direction or ability to perceive certain objects.

"I know a kid who doesn't recognize faces," the friend said.

"He had a stroke?" Duchaine asked. He knew that in a few rare cases – usually as a result of stroke or
trauma – patients reported that they had lost the ability to recognize faces. Oliver Sacks' "man who
mistook his wife for a hat" was the most famous example.

"No, he's always been that way," the friend replied.

Duchaine called the teenager's family a few days later. The boy's father told him that if he really wanted
to learn more about the condition, he should check out a Yahoo group and Web site maintained by a guy
in San Francisco named Bill Choisser. A whole community of these people were chatting online – that's
how the teen discovered he wasn't the only one who had a problem with faces. Choisser had even begun
to popularize a name for the condition: face blindness. If this were true – if there was a large, previously
unidentified population with the condition – it would be a major discovery. Duchaine started to think he
might make it as a neuroscientist after all.

IN OCTOBER 1944, as the Russian Red Army advanced into Germany, a single artillery round struck a
German command post on the East Prussian front. Everyone inside was ripped apart by shrapnel, but a
36-year-old lieutenant somehow lived. He was evacuated to a field hospital, where a surgeon removed a
piece of metal from the back of his head. The external wound healed, but it soon became clear that
something strange was going on. The officer reported that he could no longer see faces.

He was sent to a psychiatric hospital near Stuttgart, where a doctor named Joachim Bodamer examined
him. There had been reports of face blindness as far back as antiquity, but no one had studied it
systematically, so the physician decided to make a detailed analysis.

[Story continued at WIRED on line Magazine

http://wired.com/wired/archive/14.11/blind.html?pg=1&topic=blind&topic_set=]
Chuck Close
Post by Ms. Kathy on Nov 7, 2007, 10:22am

Chuck Close Encounters

Posted by Kelly

I was surprised to learn recently that Chuck Close suffers from prosopagnosia (otherwise known as face
blindness) and has difficulty recognizing or remembering faces. Yet, ironically, his iconic in-your-face
(pardon the pun) face paintings have been his claim to fame for 40 years.

When Close first burst onto the art scene in the late ’60s with billboard-sized black-and-white portraits,
he redefined what portraiture could be. His most recent work, painterly "prismatic grids," offers us yet
another take on the genre.

In the book Chuck Close: Work, Christopher Finch brings all of Close's paintings together, as well as a
selection of the artist's prints and personal photographs. The images lose something in scale, of course,
but in terms of sheer volume (more than 300 illustrations) and insight into the artist's work and
personality, the collection is awesome. I ordered my copy on Amazon.com.

Close is also the inspiration for a new ballet, C to C (Close to Chuck), which made its world premiere on
October 27 at the American Ballet Theatre in New York. The ballet includes music composed by friend
and frequent subject Philip Glass and backdrops designed by Close.

NPR recently rebroadcast an interview with Close on its Fresh Air program. Take a listen here.
Source Link: Watercolor Magic Blog - Chuck Close Encounters
http://www.watercolormagic.com/blog/Chuck+Close+Encounters.aspx

More articles on Chuck Close:

http://www.askart.com/AskART/artists/biography.aspx?searchtype=BIO&artist=25837

http://www.infoplease.com/ce6/people/A0812610.html

http://wwar.com/masters/c/close-chuck.html

The hall was booked and the invitations sent out. Mary Ann Sieghart and her husband
David had been looking forward to their joint birthday party for months.
But as the day drew nearer they started to dread the event. Though many of the 200
guests had been friends or colleagues for years, Mary Ann knew she had little chance of
recognising anyone except her immediate family.
And she couldn't rely on husband David for help as, incredibly, he also suffers from the
same rare condition that means they can't distinguish one person from another by their
faces.
Prosopagnosis, which means they are both face blind, has also hit the couple's daughter
Evie, 16, and Mary Ann's mum, Felicity Ann. Their other daughter, Rosa, 14, is unaffected.
Remarkably, Mary Ann even held down a high-powered job on a national newspaper.
She says: "It's a great source of social embarrassment as I just can't remember if I know
that person and if I do, where I might know them from.
"Of course, we knew everybody who was coming to our party but, out of context, we knew
we'd have no chance of working out who they were and we couldn't even help each
other."
The couple eventually spent most of the night last August trying to memorise what each
guest was wearing so they could remember who was who for the evening.
"I can usually cope by bluffing my way through but, of course, with so many people that
was always going to be difficult," says David, 55.
And it's typical of the way the condition affects the family's daily lives. "We've always been
useless at parties and usually spend the whole evening whispering 'who was that?' to
each other so you can imagine how nervous we were holding our own," says Mary Ann,
46.
"My daughter even joked that we should all have T-shirts saying 'Don't blame me, I'm
prosopagnosic' to get us out of tricky social situations.
"It's awful when people think you're being rude by not recognising them even though you
might see them every day."
Mary Ann first became aware of it when she was eight. Reading her favourite Enid Blyton
adventures she was amazed by the way the children were able to give such accurate
descriptions of the baddies to the police.
"I remember thinking I wouldn't know where to start and I certainly wouldn't be able to
recognise them," she says.
Her mother had also been terrible with faces and the pair often joked that Mary Ann must
take after her.
Then, as a teenager watching movies, Mary Ann realised she was struggling to keep up
with the plots because she couldn't tell one character from another.
She says: "Me and my brother watched a film with Steve McQueen and Paul Newman.
When it had finished he asked me which character was which and I had to confess that I
didn't have a clue.
"Both were good-looking with blue eyes so there was nothing to help me tell one from the
other."
Again, Mary Ann and her family just put it down to her being bad with faces, the way some
people are with names. But things got even harder when she went to university.
Each day brought a sea of new faces and Mary Ann was constantly apologising for not
knowing people, even though she'd already met them several times.
"I felt so guilty for having to keep asking somebody their name and who they were when
they clearly already knew me," she says. "Some people thought I was lazy or uninterested
but nothing could have been further from the truth."
Slowly she started to remember the names of her friends, relying on things like the colour
of their bag, the length of their hair and the style of their glasses. Of course, that meant
she'd be back to square one again if that person changed their appearance. "If a friend
had their hair cut I could easily pass them in the street and not have a clue who they
were," she says.
It was even harder if a person had symmetrical features, as a big nose or wonky ears
helped trigger her recognition. So Mary Ann developed strategies that would help her
learn a person's name without having to offend them by asking again. "If I was standing
with one person I couldn't remember and then another approached that I also didn't
recognise I would invite them to introduce themselves to each other, which would give me
both their names."
In 1986 Mary Ann was introduced to David. One of the many things they had in common
was that he was also "bad with faces".
"I'd always thought I just had a bad memory," explains David. And when they married in
1989, David joked that they should ask their guests to wear name badges.
The couple couldn't even do normal things like watch films - Brad Pitt and Tom Cruise
look identical to them.
Even when their eldest daughter Evie started to show signs of being unable to recognise
patterns aged seven, the couple still assumed it was just one of those things. Mary Ann's
mum had been the same and now it seemed their daughter would be too.
Her teacher suggested Evie see a educational psychologist who was shocked when she
struggled to put together a six-piece puzzle of a human face. But still she wasn't
diagnosed.
She had problems recognising friends, too. "Once she told me she'd met a nice friend,
she didn't know her name or what she looked like, only that she wore a red jumper," says
Mary Ann.
"I had to point out that the girl might not wear a red jumper every day so Evie had to work
out another way of recognising her."
Then in July last year Mary Ann read an article about prosopagnosis.
Amazed, she realised she had all of the symptoms, as did her husband, daughter and
mother.
"I was so excited. I knew instantly that there was no question I had this condition. I wasn't
forgetful, I wasn't uninterested, I had a real medical condition," she says.
She volunteered to be tested by a professor researching prosopagnosis at University
College London. A series of tests confirmed that Mary Ann was indeed prosopagnosic.
"It was a relief to be officially told that the problem was not my fault," she says. Shortly
afterwards Evie, David and Felicity Ann were also diagnosed with the same condition.
Felicity Ann, 80, was delighted to have a diagnosis after so many years and now suspects
her father had the condition too.
She says: "Back in my childhood people weren't interested in a problem unless you were
in pain.
"It was an enormous effort to try and hide that I didn't know who I was talking to,
especially at work.
"Even now I find it easier to smile at everybody I meet, that way I can't offend somebody
by not knowing them."
But luckily nobody in the family has the most severe form of the condition, which leaves
sufferers unable to identify members of their own family or even themselves in the mirror.
Scientists are still trying to discover why the area of the brain that processes faces has
not developed in prosopagnosics.
But, knowing they have a neurological problem is enough for the family as they can now
confidently explain away why they can't recognise a friend or colleague.
David, who is less severely affected, still prefers to bluff his way through introductions as
explaining the unusual condition is simply too complicated.
But Mary Ann says: "At last I can tell people I'm not being rude and ask them not to be
offended, though sadly some still are. I find this particularly difficult. Perhaps we will take
up Evie's T-shirt idea after all."
My Brilliant Brain: Make Me A Genius, is on National Geographic Channel this Sunday at
8pm.
Print this

The hall was booked and the invitations sent out. Mary Ann Sieghart and her husband
David had been looking forward to their joint birthday party for months.
But as the day drew nearer they started to dread the event. Though many of the 200
guests had been friends or colleagues for years, Mary Ann knew she had little chance of
recognising anyone except her immediate family.
And she couldn't rely on husband David for help as, incredibly, he also suffers from the
same rare condition that means they can't distinguish one person from another by their
faces.
Prosopagnosis, which means they are both face blind, has also hit the couple's daughter
Evie, 16, and Mary Ann's mum, Felicity Ann. Their other daughter, Rosa, 14, is unaffected.
Remarkably, Mary Ann even held down a high-powered job on a national newspaper.
She says: "It's a great source of social embarrassment as I just can't remember if I know
that person and if I do, where I might know them from.
"Of course, we knew everybody who was coming to our party but, out of context, we knew
we'd have no chance of working out who they were and we couldn't even help each
other."
The couple eventually spent most of the night last August trying to memorise what each
guest was wearing so they could remember who was who for the evening.
"I can usually cope by bluffing my way through but, of course, with so many people that
was always going to be difficult," says David, 55.
And it's typical of the way the condition affects the family's daily lives. "We've always been
useless at parties and usually spend the whole evening whispering 'who was that?' to
each other so you can imagine how nervous we were holding our own," says Mary Ann,
46.
"My daughter even joked that we should all have T-shirts saying 'Don't blame me, I'm
prosopagnosic' to get us out of tricky social situations.
"It's awful when people think you're being rude by not recognising them even though you
might see them every day."
Mary Ann first became aware of it when she was eight. Reading her favourite Enid Blyton
adventures she was amazed by the way the children were able to give such accurate
descriptions of the baddies to the police.
"I remember thinking I wouldn't know where to start and I certainly wouldn't be able to
recognise them," she says.
Her mother had also been terrible with faces and the pair often joked that Mary Ann must
take after her.
Then, as a teenager watching movies, Mary Ann realised she was struggling to keep up
with the plots because she couldn't tell one character from another.
She says: "Me and my brother watched a film with Steve McQueen and Paul Newman.
When it had finished he asked me which character was which and I had to confess that I
didn't have a clue.
"Both were good-looking with blue eyes so there was nothing to help me tell one from the
other."
Again, Mary Ann and her family just put it down to her being bad with faces, the way some
people are with names. But things got even harder when she went to university.
Each day brought a sea of new faces and Mary Ann was constantly apologising for not
knowing people, even though she'd already met them several times.
"I felt so guilty for having to keep asking somebody their name and who they were when
they clearly already knew me," she says. "Some people thought I was lazy or uninterested
but nothing could have been further from the truth."
Slowly she started to remember the names of her friends, relying on things like the colour
of their bag, the length of their hair and the style of their glasses. Of course, that meant
she'd be back to square one again if that person changed their appearance. "If a friend
had their hair cut I could easily pass them in the street and not have a clue who they
were," she says.
It was even harder if a person had symmetrical features, as a big nose or wonky ears
helped trigger her recognition. So Mary Ann developed strategies that would help her
learn a person's name without having to offend them by asking again. "If I was standing
with one person I couldn't remember and then another approached that I also didn't
recognise I would invite them to introduce themselves to each other, which would give me
both their names."
In 1986 Mary Ann was introduced to David. One of the many things they had in common
was that he was also "bad with faces".
"I'd always thought I just had a bad memory," explains David. And when they married in
1989, David joked that they should ask their guests to wear name badges.
The couple couldn't even do normal things like watch films - Brad Pitt and Tom Cruise
look identical to them.
Even when their eldest daughter Evie started to show signs of being unable to recognise
patterns aged seven, the couple still assumed it was just one of those things. Mary Ann's
mum had been the same and now it seemed their daughter would be too.
Her teacher suggested Evie see a educational psychologist who was shocked when she
struggled to put together a six-piece puzzle of a human face. But still she wasn't
diagnosed.
She had problems recognising friends, too. "Once she told me she'd met a nice friend,
she didn't know her name or what she looked like, only that she wore a red jumper," says
Mary Ann.
"I had to point out that the girl might not wear a red jumper every day so Evie had to work
out another way of recognising her."
Then in July last year Mary Ann read an article about prosopagnosis.
Amazed, she realised she had all of the symptoms, as did her husband, daughter and
mother.
"I was so excited. I knew instantly that there was no question I had this condition. I wasn't
forgetful, I wasn't uninterested, I had a real medical condition," she says.
She volunteered to be tested by a professor researching prosopagnosis at University
College London. A series of tests confirmed that Mary Ann was indeed prosopagnosic.
"It was a relief to be officially told that the problem was not my fault," she says. Shortly
afterwards Evie, David and Felicity Ann were also diagnosed with the same condition.
Felicity Ann, 80, was delighted to have a diagnosis after so many years and now suspects
her father had the condition too.
She says: "Back in my childhood people weren't interested in a problem unless you were
in pain.
"It was an enormous effort to try and hide that I didn't know who I was talking to,
especially at work.
"Even now I find it easier to smile at everybody I meet, that way I can't offend somebody
by not knowing them."
But luckily nobody in the family has the most severe form of the condition, which leaves
sufferers unable to identify members of their own family or even themselves in the mirror.
Scientists are still trying to discover why the area of the brain that processes faces has
not developed in prosopagnosics.
But, knowing they have a neurological problem is enough for the family as they can now
confidently explain away why they can't recognise a friend or colleague.
David, who is less severely affected, still prefers to bluff his way through introductions as
explaining the unusual condition is simply too complicated.
But Mary Ann says: "At last I can tell people I'm not being rude and ask them not to be
offended, though sadly some still are. I find this particularly difficult. Perhaps we will take
up Evie's T-shirt idea after all."
My Brilliant Brain: Make Me A Genius, is on National Geographic Channel this Sunday at
8pm.
Print this