tirsdag den 24. januar 2012

Today is Moebius Syndrome Awareness Day

Taken from many faces of moebius syndrome

Moebius Syndrome is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side. Most people with Moebius syndrome are born with facial paralysis, which means they cannot close their eyes or form facial expressions. Limb and chest wall abnormalities sometimes occur with the syndrome. Most people with Moebius syndrome have normal intelligence, and others should take care not to confuse their lack of facial expression with dullness or unfriendliness. It is named for Paul Jullius Mobius, a neurologist who first described the syndrome in 1888.

My personal view

Moebius is close to my heart and the people around me... cause I have it.
For many years I have been ashamed of myself for looking the way I do. I was not told until a year or two ago that moebius was a handicap so I have never really learned to live with it like that. I've been in and out of the hospital since I was very little to get everything checked (nothing serious), and I guess the doctors forgot to mention to my mom that moebius is a handicap.
I was later told that yes the syndrome is rare but the state mine are in is even more rare (very "mild case", so last time I was at the hospital they took pictures to show to students so they hopefully can learn a bit more about this.
I know now that this is not a well known syndrome and for a long time I thought I was the only one in the world who looked like this, so I am pleased that the word about moebius has spread the way it has so it can help others out there in the world who might feel alone cause of it 
Over these last couple of years I have learned to live with moebius, there have been times I've felt alone, i've been bullied and generally just didn't fit in, but I have learned that looks does NOT define who you are, it truly is whats inside that counts, and I know there is a lot of wonderful people out there that smiles on the inside

if you guys wanna learn more about moebius you can check it out here

Have a great day


4 kommentarer:

  1. thanks for sharing this with us.
    i didn't know anything about this syndrome and now i do. awareness is very important. ;)

    1. You're welcome and thank you for taking time out to read it =)

  2. i agree with lena! followed!

    hope you follow back!


    1. Thank you so much.. I followed back