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Conditions

Moebius Syndrome

Moebius Syndrome

Moebius syndrome is a rare condition that affects the 6th and 7th cranial nerves, resulting in paralysis of the muscles that control face and eye movements. This means that those affected by Moebius syndrome are unable to move their face: they cannot smile, frown, suck or blink.

Besides a lack of facial expression, other symptoms of Moebius syndrome include problems with feeding and swallowing, crossed eyes, drooling, and hearing and speech impairment. The disorder is present from birth but, due to its rarity, it is not always diagnosed straight away. It is thought that there are only 200 cases in the UK. The cause of Moebius syndrome is currently unknown, although research is being undertaken to establish whether it could be genetic.

There is no cure for Moebius syndrome, although some of the symptoms may be treated. Crossed eyes, for example, may be corrected with surgery and physiotherapy and speech therapy can be beneficial in improving coordination, communication and ability to eat. Around 30% of those with Moebius syndrome are on the autistic spectrum. Life expectancy is not affected by the disorder and support groups exist for those who are affected.

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Hi my name is Melanie and I'm 27 years old. I don't have full fledged Moebius but I do have partial nerve paralysis that affects speech and facial expressions. I was diagnosed at birth and I assume the docs deemed my condition moebius because it was the only close answer for what I have. I still have low self esteem but I get through life best I can. When people ask me to smile or why I look sad/bored, it still hurts? I try to explain why I look the way I do. As a child I was outgoing but as I got older and more self aware of my differneces. I shut down due to stares and mean comments from kids. I dont Being an adult now, I'm just to get my confidence back and I don't have many friends since I stay to myself. Hopefully someday I will be the person I am suppose to be.





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My name is Danielle, I am a 31 year old staff nurse who is recently married. I had my diagnosis confirmed when I was 27, my parents had been told I had Bells Palsy from birth, I wasn't convinced the older I became. I am fortunate to say other than minimal movement in my eyes and the facial palsy I have no other characteristics of the syndrome. I would be lying if I said that when I was younger life was not hard, I often thought in my teens "I wish I was normal aka pretty", now I am older I think God gives you what you can deal with and I am very lucky. I have lead a normal life, if anything I think I was that someone who was supposed to be a nobody, if anything from day one my parents and family never bubbled me from life, just told me that I can do anything as long as I work hard for my dreams. To this day, it hasn't stopped me and I am grateful for all of the love I have in my life. Sometimes bad things happen to nice people, I do not let this syndrome define who I am! So glad to see all of these messages, as if anything we know that we are not alone even after those days in the past when days are dark and no one can understand the sadness you have inside when someone has made a cruel comment. Brush it off, we are te better person.





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Hi, I am 14 years old and I have moebious syndrome. I know what it feels like to walk around everyday not being able to smile, it feels like a curse to me. I am currently the only one in my family that has moebious syndrome, so no one understands what it's like to not be able to do something others can. When my peers and family members ask me to smile, my heart feels like it's being ripped out of my chest. I am ashamed to walk around not being able to smile. I am ashamed that strangers come up to me and ask me why I don't smile or why I look different. It's a horrible burden. I just wish I was normal.





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Your message has melted my heart. The teenage years were my hardest and I used to think all the time "please let me wake up normal", try and think about what you want to get out of life and work hard to achieve them. People probably will expect you to close yourself away after school. Some days are harder than others I get that, well people are mean you just want to hide away and cry! Believe in yourself as you get older and get what you want out of life this gives confidence to stove! X

Hi I'am a 41 years old, and truly I feel bless. I live with my syndrome really good, please don't take so hard on u. Be aware that what other people think about u don't really matter, it is what u feel & think & u should be feel good about yourself. Turn around your handicap as a strengh, don't see yourself as weak. Its a long figth but don't give. If u are a boys chase girls for example, being dump or reject won't kill u. I will tell i just get married everything is possible to achieve in ur life, but u have to go get with ur handicap its up to u. U are already a winner but u have to beleive in yourself & please DON'T BE PITYFULL the world is a jungle don't eat up. Good luck & build up ur strengh, but don't be mean toward other people u better than that.

Hello to everyone who has commented! It is great to hear your stories, and can I say how much I admire hearing from adults with this condition. My 3 year old son Archie has Moebius syndrome too and he is an amazing and beautiful little boy! Before he managed his cute wonky smile he could smile with his eyes anyway :) Archie is a non identical twin and so it was a very difficult first couple of years for him as he spent a lot of time in and out of Picu with frequent chest infections (as he didn't manage colds too well due to a weak cough and weak swallow) Archie had to have a gastrostomy at 4 months old as he was unable to breast/ bottle feed but we hope that he will manage to eat safely one day. I am keen to find out whether most people with moebius can eat normally? There may be another cranial nerve involved in Archie's case. Archie was only diagnosed at 2 years old but we could see all along that he was as bright as a button and knew deep down from the start he would be ok - but until the diagnosis it was a 'wait and see' situation so I suppose it was reassuring to find out ( found out myself and asked geneticist!). Strangely, Moebius syndrome is just a name to me now! But Archie, despite his difficult start, started walking in May and is now running, jumping and talking! He is a remarkable little boy and he doesn't seem to be affected by the fact he has had to work ten times harder to reach every milestone - although it was often frustration to copy his brother that spurred him on! My husband and I honestly believe that being a twin has helped in Archies case, and we have always treated him just the same as his brother Oliver. We have yet to make contact with any others with moebius, but it is something we would like to do as it is such a rare condition. The doctors can only give facts. I think maybe now it is time we made contact with other families! Best wishes to you all xx





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Hello dear I know that you wrote this comment three years ago but it realy gave me hope I am Reem from Syria i live now in Holland my son was dignosed two days ago with moebius syndrom i was skared because i knew nothing about it My son is now a year and a half and he can not walk yet your story gave me hope that he will walk and have a good life Thank you so much for sharing your story Thank you again

Hi my name is Isaiah and I also have moebius I'm 20years old and live in Chicago. Its very hard living with moebius people always ask me why I look like that or why you can't smile it hurt every time. I hope to reach out to as many people as I can with this condition. It feels good to know I'm not alone and there's people out there just like me.

Hi guys i sadly missed this but tbh id never be embarresed of my daughter ever am always pushing.jessica to reach for the stars! she is my whole life am a very oroud mummy she is also going to be on something special she is just amazing xxx





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Hi I too missed this programme and have only just come across this on internet as I have a 17 year old son Macauley who has Moebius and has just announced that he would like me to research him having an operation to bring his lips together to stop his teeth sticking out! And maybe also a smile he says. Bless him we are so proud of him he has the best sense of humour and is always making people laugh! Everyone who meets him loves him and he is so kind and caring - he is definately not an embarrassment - it is the people around who are the embarrassment as they are ignorant to people looking a little different!

Hi, I saw this item on the show last night and this reminds me of my own problem with Bells Palsy for more than 4 years where I have semi paralysis of my face and suffer the same effects of having no proper smile, lack of suction, etc. Neither my GP or I had found a treatment, would the procedure on the show provide a solution ? Regs Eddie





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Hi I appeared to have missed this show, which is unfortunate, as I would have been very interested in watching it. I am 53 and have Moebius Syndrome, although I wasn't actually given a diagnosis until I was 22, when my doctor referred me for genetic counselling as I was about to be married, and wanted to know what the implications would be if I were to have children. My face is completely immobile and the only embarassing thing is when people (ignorant of the facts) tell you to cheer up or smile - this really hits home, when most of the time I don't really think about it. I was also born with club feet, another aspect of this disorder, but thanks to corrective surgery (7 operations) I was able to walk normally. I have led a good life, been married twice and have a beautiful daughter, who was not affected by Moebius, although even if she had, I would have dealt with it - definitely not the end of the world!





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This was so good to read. I have Moebius and am married and we plan to start trying to get pregnant soon. Not much research on the genetics and my biggest fear is passing it on. It isn't that I wouldn't love my child, regardless, but to know I knowingly brought it on them terrifies me. I have always tried to live my life without being self conscious but, as many know, it is still a hard trail to walk. Reading these stories gives me hope. Thank you.

My name is Christine, and sometimes I have a problem with my speech which is slurred, and I walk into things as if I am drunk, and I am in need to go to bed and sleep, then when I wake the next morning i do not remember anything and I am fine, this frequently happens and I have been under the hospital and they cannot find anything wrong, I do not drink alcohol and have well balanced diet, (and when I am having one of these attacks I am argumentative with my husband) I am now getting concerned re this, can you please help. Which would be much appreciated.





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i have a numbing sensaition to the right side of my face however it feels like when at the dentist and anesthetic is given it feels like the final stage of wearing off i am 64 years of age





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Hi, Does it come and go? Does it help to massage your face? you may have a blocked salivary duct? your GP can refer you for a sialogram which will identify if there is a problem.

my son is 9 months old and has moebius syndrome, i was a bit shocked that this was on "embarrasing bodies" as there is no way i would ever be embarrassed about the way my son looks. Jake is an inspiration and i hope my son can fulfil everything he wants to do in life just like jake did. I am on all the moebius sites and have recently met up with a family where her son has moebius syndrome and it really helps to talk to people!





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