STORM2K

Has anyone here heard of Moebius syndrome or know someone that has it.

I have a mild case of it. It's a facial paralysis and it can sometimes result in facial abnormalities. The only abnormality I have, fortunately, is that my mouth doesn't fully close and my teeth are a little big (my two front teeth, the rest are fine).

Now here's a more detailed explanation of it:

Moebius Syndrome is a rare disorder characterized by lifetime facial paralysis. People with Moebius Syndrome can't smile or frown, and they often can't blink or move their eyes from side to side. In some instances, the syndrome is also associated with physical problems in other parts of the body.

The Moebius Syndrome Foundation is a nonprofit organization started by parents and people with Moebius Syndrome. We've come together to do what we can to fight back - by spreading the word among the medical and lay communities and by supporting research into the causes, treatments, and possible cures for Moebius Syndrome.

Moebius Syndrome is extremely rare. Two important nerves - the sixth and seventh cranial nerves - are not fully developed, causing eye muscle and facial paralysis. The movements of the face - blinking, lateral eye movements, and facial expressions are controlled by these nerves. Many of the other 12 cranial nerves may also be affected, including the 3rd, 5th, 8th, 9th, 11th and 12th.

I can't blink but my eyes close ok. I also have somewhat of a speech impairment but I've overcome it by speech therapy. Sometimes, I don't even realize I have it.

What bugs me most of all is when people hear my voice and assume I'm retarded or when someone stares at me. I'm just as smart as they are.

Oh and I got the "Smile Operation" by Dr. Zucker at Sick Kids in Toronto, Ontario when I was 7 so I can smile somehwat now. I can smile a lot on my right side but my left side is still mostly paralyzed.

But, I've got a milder case than many others, so I'm not complaining.

Jason........about 4 years ago we had a young lady with this syndrome in our class. There was an article in our area newspaper about an adult women with Moebius only a few days before school started, so I had limited knowlege about this unusual syndrome. Our girl had very obvious challenges; no ability to smile at all......just had had several teeth removed......also parts of one side of her body had not fully developed. When I did some research on this (thank goodness for the computer!) I realized that some of the characteristics that were common in this syndrome were simply not there! After looking/comparing for quite a while, I believed she may have something called "Poland's Syndrome".....I was excited to share this info the next day. Everyone had a good laugh that I had spent several hours searching for info that could be helpful to this young lady.....and had diagnosed something different. Imagine my surprise a few weeks later when one of them told me I was right?!?! Poland's syndrome can also go along with Moebius.

My little gal seemed to have normal intelligence, but had been very sheltered her whole life. When we had each student pick their favorite annual to grow, she picked Pansies.....because of their little smiling faces. I think I was the only one who caught the connection. Even tho she has graduated, I still make sure she gets a pot of Pansies each spring.

Isn't the human body an astonishing thing! I am continously amazed by the various syndromes now being identified. Perhaps most of these were always there......perhaps some have been more recently caused by environment or food additives.......but it sure seems more and more syndromes are being revealed to us.

I want to thank you for your candid post.....and allowing each of us the opportunity to learn more of Moebius syndrome..........p

Thanks jason for sharing. I've never heard of this either but it important to make people aware of different syndromes and diseases.

Stephanie and Pam, it sure is important to let people aware of different syndromes and diseases.

Jason.....I found that article I talked about in my previous post! It says there are only about 800 cases known in the world of Moebius Syndrome! The article is about a woman named Leslie VanDeCar from Charlevoix, Mi. It's an excellent article explaining this neurological disorder......and shows her determination to educate others about this syndrome. She found chat rooms......and talked to area clubs (Loin's Club, etc.) to help others understand. If you'd like, email me and I'll send you the article.

As I often do after finding out as much as I can about any "new" disease or syndrome (this year we have a student with "Fragile X") I put my thoughts into words.....they usually become a poem. Here's the one I wrote about our Alicia..............p

Something's very different...
this child without a smile;
and yet those eyes reach out to me...
"Please think that I'm worthwhile!"

"This life - it is not easy;
it's hard to understand.
I too have dreams, and yet is seems
my future has been planned."

"I know that I am different -
but I didn't ask to be....
emotions hide - they're kept inside -
but none-the-less I'm me!"

Thanks, petal. I'll send you my e-mail address as soon as I have time.

800 cases worldwide. wow!!

Jason, that's what makes Storm2K so very special...we're all like one big national/international support group for each other!

((((HUG))))

God Bless,

Eric

Jason...thanks for making more people aware of this condition. I have a speach problem myself, I stutter, not as bad as I did growing up, I only stutter now when I'm stressed, really tired ~OR~ telling a lie! SO....at least it keeps me HONEST!

Dennis

I had Bell's Palsy one time. I was at the orthodontist with my son, and my face began tingling and went numb, then my tongue went numb, etc. I went right to my doctor, and he gave me some kind of a shot, and thankfully no permanent damage was done. I have heard that some people who have this have droopy eyelids, etc. permanently. Is this similar to what you have?