Bethlem Myopathy

Hi. My three year old son also has bethlem myopathy. I'm desperate to talk to people who have children with this but (luckily) it's so rare.

My partner has bum and we have two sons. One has it, the other doesn't. We didn't know what type of md my partner had until a few days ago and we're going to great ormand street in feb to get a formal diagnosis for my eldest son. We're in the uk, in rutland. Please contact me if you want to get in touch. I'd really appreciate it. X

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Hi guys I am 34 with Bethlehem myopathy never met anyone else with it I have 2 children my girl she's 12 she don't have it and my son joe he's 8 he does have it be good if u could email me 

 

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Hi!
I just got diagnosed with BM. It would be 'fun' to talk to others who can relate. :)

HI mistyice26257997, I am in the U.S. and as well have been finding most things for the U.K. I Just received my official diagnosis today, however my dad has it and I have known I have it for a while now. I am almost 23 years old, and am curious how other woman with Bethlem Myopathy deal with pregnancy.

hello everyone I am 41 years old and since I was about 15 I knew something wasn't right and my mother and other family members thought they had a different type of muscular dystrophy I was just diagnosed a few months ago with bethlem myopathy and now the family finally news what it is I have never spoke to anyone else besides family members who have it would like to talk to anyone about it sometime

I have bethlem myopathy I'm 56 years old and I have a pain level everyday over 10, more like 20. The debilitating pain started to progress over the last year to a point where nothing helps the pain and all the doctors and Pain Management tell me I should not be in this kind of pain however I am in this kind of pain I don't know what to do I'm at my wit's end these doctors have no idea how bad the pain is I can't sleep I can't sit I can't walk without being in tears the doctors have given up on me I don't know what to do at this point I would rather be dead than go on like this

I have bethlem myopathy and I'm 56 years old I would be glad to talk to you about it I've always worked a full-time job until I was in my mid-40s then the pain got so bad I had to stop working I have one daughter who does have it and she has two children her son has it but her daughter doesn't the last few years have been very very rough the last year alone has put me down where I can't even leave the house except to go to the doctors I do know everybody's different on how it affects them unfortunately I'm affected very badly with very bad chronic pain since it's something that is so rare none of the doctors can really help me it's so bad I'm down to 65 or 67 lb if you have any questions I'd be glad to help you I live in Florida in the United States.. my name is Kathy

I am 41 and have Bethlem Myopathy. I was originally diagnosed with Congenital Muscular Dystrophy when I was 5 after a muscle biopsy. I have 2 children. My daughter has Bethlem Myopathy as well. She is 13. My son is 14 and he does not have it. I am the first person in my family to be diagnosed with it. My doctor believes due to spontaneous genetic mutation. I can still walk but can no longer climb stairs without help from my husband. I am weak and tire easily, but am trying to stay active as possible.

Im 36 with Bethlem and have a 17yr old son with it too. With my son I found out when he was abt 2yrs old. Prior to diagnosis he had been having therapy because he cld not sit up at first... Then never crawled wld sorta combat around. Therapy did bring him to walk at abt age 3. They at first just said MD n ran tests over the yrs to see what type and due to the biopsy scar which was reconstructed about three times. How big and how swollen it was and never went down is where one doctor figured out that it was in fact bethlem... She stated that bethlem was the only sort of MD that would cause keloids that is what the scar turned out to be. I then learned any deep scarring including acne could cause the keloids to come anywhere on the body... Including our skin always feels kind of like you've always got goosebumps those are symptoms related to bethlem. I later added up some things that seems in common with myself and found out that I was in fact the carrier of muscular dystrophy bethlem. I will say though I have three children one older and one younger than the boy and he's the only one that has it. So yes there are in fact chances of your child not getting it. I however have been having different type of symptoms other than just the weakness and contractures I'm also having like shocks throughout my body feels almost like nerve shocks... And bones that they claim or not related are causing a lot of pain. I cannot go to the bathroom on my own I have to self Cath I got TMJ in a manner that I can barely open my mouth. My hands I can barely write with them or hold on to anything without them either getting tired or stuck. All things the muscular dystrophy specialist claims it has nothing to do but others that have seen me and neurologist claimed that it does or should have something to do. The saddest part about the disease is not very many people know about it especially doctors so they don't know how to treat it or help it should I say. Any further questions feel free to hit me up ***this post is edited by moderator *** *** posting of private information such as name, phone number or email address is not allowed in order to protect your privacy*** Please read our Terms of Use