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
Can you tell us the name of the particular type of muscular dystrophy?
Yes it's called Duchenne MD or DMD.
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.
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
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.
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 !!!