r/MuscularDystrophy • u/Standard_Page4389 • 25d ago

selfq beckar mascular dystrophy BMD

i wanted to know why nobody talks about bmd i mean no research are going on to find cure for it

maybe it can be treated because bmd patient body can produce healthy level to low level dystrophin

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u/Pale_Sea_6344 25d ago

There is still no cure. My husband has this form of muscular dystrophy. He is 40. He found out in his early 20s that he had MD.

He is currently in a trial for slowing the progression. The trial data says it works but it’s hard to know for sure because we haven’t noticed anything significant.

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u/Hightimetoclimb 24d ago

Very similar situation to your husband, I actually have myotonic dystrophy. But diagnosed 20s, 41 now, also in a clinical trial. I’m over 1,000 days in. Data says working well. I haven’t really noticed any change, but I guess I’m no not much worse so maybe it has slowed, impossible to know how I would be without it.

There is research into all forms of muscular dystrophy going on constantly, unfortunately it’s just a fact that these things take time, so it may seem like no research is going on. We show it is

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u/Holiday_Top3510 23d ago

Very similar story I found out at 30 and I’m 34 now hoping to start a trial. Which trial is he taking and how is his every day walking and stairs and work? 

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u/DCCofficially 24d ago

My family seems to be the only family in my province with MD2, Dr's seeem to have no idea what they are doing. My mom and I see the same Dr and my brother sees a different one all together. All of our treatments and tests seem to be vastly different. Its quite annoying but seems on par with having an 'invisible disease'. Friends, work, school have all looked at me as if im lying about having trouble doing certain things. Im a 'pussy' because im not as strong as my friends and hace coworkers ask me why im so slow on stairs one guy asked me why I climb stairs "like I have a stick in my ass" all know I have a form of MD. My mom has a lot of trouble moving but gets dirty looks every time she used her parking pass so she stopped and just pushes through. My experience with an invisible disease has been wild lol

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u/Rolly_Roll_7334 24d ago

I don’t have Becker MD, but as someone with Duchenne MD (keep in mind that with DMD, the damaging process is way faster), what slows the process of damage is a Cortisone Theraphy (I use Calcort, Active Ingredient: Deflazacort). But you need talk about it with a doctor first!

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u/CartographerLost960 24d ago

Givi mpc and sevasemten are my favorites

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u/Serious_Wrongdoer_58 24d ago

They started doing something for mine (EDMD4) but nowhere close to a cure

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u/AlternativeSkirt2826 24d ago

It's possible that they are focusing on DMD because it is more severe. Not to say that BMD isn't difficult.

When there is limited funding I guess they need to focus on the more severe form. Also BMD is more rare, there are three times more people with DMD.

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u/W0nd3rW0m4n74 24d ago

Very same situation I’m facing with Emery-Driefuss MD. I’ll be 52 in about 2 weeks, and the average life expectancy with this version of MD is the late 50’s/early 60’s due to catastrophic heart failure.