Horrible brace

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Hi I hope someone can help.

I was diagnosed with an acute and rare form of MD and they have put me in something that can only be described as a torture device.

It is a body brave that covers everything apart from my face. I hate wearing it and I have to wear it for life. Has anyone ever had to deal with something like this? It's made of plastic, foam and metal and I can hardly move in it

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6 Replies

  • Posted

    Can you tell us the name of the particular type of muscular dystrophy?  
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    • Posted

      I am sure that Duchenne is actually one of the most common types of muscular dystrophy (although still a rare disease). It is normally diagnosed at a young age (typically about 5 years of age). I myself have McArdle Disease (confusingly also sometimes referred to as "MD"), most commonly not diagnosed until adulthood. I have known people with McArdle's to be wrongly put in braces, so I was keen to make sure that was not the case with you.  I wish you the best of luck.
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    • Posted

      Thank you Andrew.... I was hoping you could tell me something else I could do. This brace is awful... It's like being in a plastic prison
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    • Posted

      Sorry Chris I have no experience of Duchenne. But I do know that being diagnosed with Duchenne as an adult is very unusual, so you may want to make 100% certain that it is correct.

      My experience is that doctors tend to over-react. (With McArdle's they used to tell people to stop all activity and this was disasterous. Some doctors still do that today. Whereas the best doctors, and myself as a patient advocate, are getting people out of wheelchairs and braces through gradually increasing aerobic exercise. )

      I suggest that you make sure your doctor is properly knowledgeable about Duchenne and is fully up to date with current best practice.

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    • Posted

      Thank you, I will ask them if they can looker it again. But they don't really listen to me anymore. When they locked the brace on I complained but no success!!! It takes ages to do anything And I cannot even go to the toilet !!!
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