I (20M) have Becker muscular dystrophy and was diagnosed when I was 8 years old. Been 12 years of it and I just get worse every year, the feeling of knowing you'll get worse and there is nothing to do is so depressing.

I turned 20 3 months ago and I realized at best I'll probably live 40 more years. I haven't had a job, have never had a GF, and haven't really accomplished anything in my 20 years on Earth. Seeing all my childhood friends having a future that isn't depressing makes me feel more alone.

I spend most my days playing video games, or watching YouTube, TV, or movies. Its kind of hard to have a social life when you feel so different to anybody. Laying in my bed home alone with nothing to do productive.

When I see able people wasting their life being lazy pisses me off because I feel like I would be so happy being able to be active.

Everyday I feel so alone no one to talk to except my parents I feel so bad that I make their life way too inconvenient. I have to use my electric Wheelchair to go anywhere that I have to walk for long distances. I feel like im not good or talented at anything that would help my future.

All the time I think about how great my life would be if I had a normal life, but that will never happen. I want a positive outlook on life but I just can't no matter how much I try.

(Any Advice for me, from other people with MD)

Hi everyone,

My 3-year-old son was recently diagnosed with Duchenne muscular dystrophy (DMD) after genetic testing.

His genetic report showed:

• Gene: DMD
• Variant: c.4545_4549delGAAGT
• Protein: p.Lys1516Ter (K1516*)
• Exon: 33
• Variant type: 5-base-pair deletion / frameshift
• Zygosity: Hemizygous
• Classification: Pathogenic

Interestingly, his DMD MLPA was negative, and the mutation was identified by sequencing. We understand this is because it is a small sequence-level deletion within exon 33 rather than a whole-exon deletion/duplication.

He is currently around 3 years old. His CK was around 16,000 U/L.

We are trying to understand more about this specific mutation, rather than just general DMD information.

Questions for other families:

1. Does anyone here have a child or family member with DMD c.4545_4549delGAAGT / p.Lys1516Ter?
2. If so, what was the motor development like during the first 5–10 years?
3. When did you first notice running/jumping/stair-climbing difficulties?
4. When did treatment with steroids begin?
5. Has anyone with this particular mutation had a muscle biopsy or dystrophin testing?
6. Has anyone with this mutation participated in a gene therapy or clinical trial?

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

I (21F) was diagnosed with Miyoshi Myopathy this year, though I had been having symptoms since 16. I thought my weak calves were just due to not exercising enough, so I may have gone overboard and accelerated their decline…

In March of this year I decided to go get tested, not really expecting them to find anything but then they said my CK levels were over 10k, and to go to the hospital the next morning. I did, they ran every test they could think of (over the course of over a week) and finally did a DNA test. Cut to a few months later and I have the results - it is highly likely I am affected by Miyoshi.

Like I’m sure most of you know it’s a slow progressing disease, but I still can’t help but feel sad and alone. I joined Jain too, but I’m not sure how to talk to people…

I don’t feel hopeless I guess, just sad. It’ll be a while until I need crutches or a wheelchair, but lately I’ve been starting to drop things a lot more often and find gripping things tightly harder than it used to be.

My family…they’re supportive and I’m extremely grateful to them but they don’t understand. Am I weird to feel this way?

Hi again. I was recently diagnosed muscular disorder that falls between congential bethlem myopathy and myasthenia gravis. My doctor couldn't put a name to it. Basically two genes on my genetic test came up as mutated. I have droopy eyelids, facial weakness, my right thumb is missing muscle/muscle wasting, my hands was noted to be small, and my limbs were noted to be slightly disproportionate, I have a leg length discrepancy, and I have scoliosis. My nero was making a lot of notes.

I'm feeling more and more weaker as time goes on though. I'm limping. The weaker leg keeps buckling now and I get really bad pain in my legs when I'm trying to sleep. Sometimes I can barely walk. Getting out of chairs is harder. Even when I'm not at work, I'm in a pain if I walk around too much. I also have some weakness in my arms. I also have no energy.

I'm having a really hard time working now and I only work part-time. I work a very physical job. Some of family keeps telling me to quit but then I won't be able pay bills, feed myself, or keep a roof over my head. None of them are offering support. Just criticism that I'm not trying hard enough to find another job better suited for me. I can't stand for too long or I'm in pain. Most jobs in the US want you to stand. Including my job. I can't find a job sitting and I don't know if I have the energy to even do that. My nero said he would see if a social worker could help me get disability and some benefits but I'm wondering if they can help. I really need disability but I can't go broke waiting on that either. Any advice? And no my job does not accommodate. They lie and say they do but they will put you on unpaid medical leave and leave you in limbo till you give up on your accommodation request.

Previous post: https://www.reddit.com/r/MuscularDystrophy/s/o8Q02fO9Mn

okay, hello everyone.

ugh how to start, this is tough. very very very tough. i stopped working in june 2024, struggled financially until September when I hopped on unemployment. I stayed on unemployment until may 3rd 2025 all I did was stay inactive, eat like crap and laid around all day, I was in a highly toxic relationship and endured abuse and stress. that stayed that way until july 2025, I had sat around drinking redbull, and eating junk food, decided i felt weird, and decided to just drop and do 100 push ups to a strength training video, and it wasn’t normal push ups, some were diamonds, hold the push up halfway etc. all different types of push ups. and then i woke up the next morning with pain in my arms that was so bad, I couldnt even move my arms. they were stuck, everytime I tried to move them, my muscles were tingly and very very painful, I pushed through it for the day, until I woke up in the middle of the night have my arm be stuck straight instead of the stuck halfway up. I went to the hospital, they found creatine kena with a value over 100k. There machines can only read up to 100k. They suspected 250-275k.
I was on a non stop IV, and 3 different types in the rotation, several anxiety meds, and was admitted and they said if it did not get better I would be life flighted, they set me up with a PCP immediately!!! At that point i was 24 years old. my life turned back to normal after all that. so I didn’t go.

fast forward to now, August 13th, haven’t really been active, drinking energy drinks, working From home now, I was driving to get lunch yesterday, felt a pop in my left side of my chest. Not abnormal, My bones pop all the time when I turn too much. but then I started to sweat majorly through the AC, And felt nauseous, palms are sweaty, then boom, felt this pressure over my heart into my shoulder and into my arm and up into my neck and my chin. drove straight home in a panic, chest tightened, stomach felt like it was being sucked up into my chest, felt like I was going to pass out, called 911. Met the ambulance. proceeded to wait for my fiance to drive me to the hospital. which she did, they did ekg and scan, nothing Wrong. They took for forever, decided to go to my states top tier hospital, then they ran blood, and a ekg, I waited hours, they brought me into a room and said “i think you have a muscle dystrophy and we have a pcp follow up for you” “it’s definitely muscle skeleton“

idk what to think of this. I’m in including everything I’ve dealt with. But I’m very fearful being 25 years old.

mind you there was a 3 month period where I did work out everyday at the gym and eat decent and drnsk a lot of water and I felt fine, I went from 129 pounds to 169 pounds. And I had no issues. everything was fine. I can move 80 pound concrete bags For hours and work and lift heavy stuff. But sometimes when I stop, I lose strength pretty fast. My muscle does go away pretty fast.

how many year a half body(right part) paralyzed person can live if current age is 60

When I was 11, I was diagnosed with BMD. I think my CK levels were somewhere around 2,000. I’m not exactly sure what that number means, but I was told I was on the milder end of BMD.
The reason I got diagnosed was because my 12-year-old brother passed away during a family hike. He had an enlarged heart. After that, my whole family got tested to see if we had the same condition. Everyone else’s results came back normal, but that’s when I found out I had BMD.
Looking back, a lot of things started to make sense. I was always a little worse than other people at sports, even though I’ve always loved being active and playing sports. It’s heartbreaking knowing that I’ll probably never be able to do sports the same way as someone without BMD.
I know I’m probably one of the people in this subreddit who is less affected by the condition, but it’s still really frustrating. I try to live a normal life, but it feels like almost every aspect of life is harder for me than it is for other people.
I also have a question about sleep. I’ve read online that people with muscular dystrophy may need more sleep, but is sleeping 10–11 hours a night too much?
Finally, has anyone here figured out how to not let BMD control their life and live as normally as possible?

I really hate doing research on DMD online especially as someone who has DMD. Searching literally leaves me feeling miserable for the rest of the day. But I genuinely feel this line is very unrealistic with today. Lots of people with DMD are living well into 30s, 40s, and I've heard some even live till their 50s.

Hello, my nearly 7 year old was diagnosed with DM1 last year and we are still learning what that means. She is easily fatigued on walks and I'm searching for solutions on how to keep her enjoying activities like the zoo or museums without being overcome by exhaustion.

Does anyone use and recommend a stroller that's made/ marketed as a special needs stroller? I've looked at a few that are quite pricey. I'm willing to spend the money because I think it would greatly improve her enjoyment of outings like this. But would prefer to hear from someone who actually benefited from the product. I got rid of my jogging stroller a few years ago and she's at the high end (around 40 pounds) of what many brands of regular strollers max out at.

Thanks for any responses.

My niece, 28, was just diagnosed with FSHD with no known family history. She is thinking about joining the Scholar Rock trial, which looks like it just started. What do you guys thinks? I know Roche failed, but Scholar Rock succeeded in SMA where Roche failed. Could the same be true for FHSD?

Hey guys I’m wondering does anyone have any tips/recommendations that they personally tried and worked to ease the lower back pain? I usually feel uncomfortable around the spine when standing upright for more than 2-5 minutes. I’m sure weight plays a role but i’m not that fat.

I try to swim and exercise my back muscles 3 times a week and i take good amount of supplements. But the change is hardly noticeable.

What is your opinion on the Sonothera treatment? It's extremely interesting, and almost unbelievable. They are expected to start first in human trials in 2027.

Duchenne muscular dystrophy here. I received an invitation so I presume i am eligible.

https://clinicaltrials.gov/study/NCT07543562