My 10 month old has bethlem myopathy 2 and has been on a feeding tube since birth due to dysphagia and aspiration. I’m curious if anyone else has dealt with this specifically and how long you or your little one was using an ng or g tube. I know every person is different but just curious

I had IVIG for an unrelated autoimmune condition during a hospitalization for a crisis related to said condition + obvious vulnerability with muscular dystrophy on top of it. Both my neurologist and I were curious if it will benefit my muscular dystrophy as a sort of off label sort of effect.
Wondering if anyone else has had to go through infusions of it and felt it helped with muscular dystrophy symptoms or solely just helped with the condition that was targeted.

So far, it’s barely just now kicking in for me in relieving my symptoms from my autoimmune condition. Truly wondering if it’ll have any impact on my FSHD. Maybe increased energy levels/ stable immunity will help me stretch more and move around a bit more. Who knows!

Is there any body knows hospital or physiotherapy centre or Ayurvedic centre , which treated hirayama disease..

Hey everyone, I'm A Doctor with LGMD.

Having seen firsthand how confusing it can be to navigate diagnoses, genetic reports, and the constant search for upcoming treatments, I decided to start building a dedicated mobile app to make this easier.

The goal is to create a single, easy-to-use resource that covers:

Comprehensive guides to all types and subtypes of Muscular Dystrophy

Clear breakdowns of inheritance patterns and genetics

Live updates on ongoing clinical trials and pipeline therapies

Practical resources for patients and caregivers

I’m building this as a passion project, and I want to make sure it genuinely helps rather than adds noise. If you have a minute, I’d love to know:

What do you feel is currently missing from existing websites/resources?

What’s the biggest frustration you face when looking up research or trials?

Appreciate any thoughts or suggestions you’re willing to share!

Real Patients is looking for people who have been diagnosed with a rare disease and/or their loved ones for a paid online interview $120 USD Compensation

Details

• 60-minute virtual interview

Purpose

• To understand how people living with a rare disease and their caregivers find and use health information, and their interest in listening to and engaging with a rare disease podcast

Requirements

• Diagnosed with a rare disease, or a caregiver to someone diagnosed with a rare disease
• US resident
• 18+
• English speaking

Real Patients connects people living with health conditions to research opportunities that shape how healthcare works. Founded by patients, for patients—because the best way to understand the patient experience is to talk to real patients.

Initially, I have DMD and I want to talk and maybe form a friendship with others who have DMD, of course without judgment and with understanding.

One of the reasons is that the illness is fundamental in its impact on my life, and naturally most people don't know about it. If I mention it, they won't understand, and they're often shocked. It's hard to explain the precise details and changes, not to mention that you either feel like you're pitiful or that the other person is indifferent.

That's why I often don't mention the illness, but then the matter becomes annoying because the other person assumes your situation is normal. And here's the difference, if you talk to someone who suffers from the same condition as you, your situation is understood and lived, and maybe here you feel understood to some extent.

I’m starting need more physical accommodations at work, right now it is being able to set a boundary when asked to do physical labor that puts me at risk of falling and/or restricts my ability to perform other life functions due to fatigue.

Does anyone have any experience or advice about how to navigate this process?

For context, I work for a Government conservation agency where I have to do outdoor site visits semi frequently. I don’t want to restrict my ability to do activities like walking reasonable amounts which are good for my health and day to day job, but I’m noticing I need the ability to protect myself from being asked to walk in steep terrains or lifting/carrying heavy objects…. especially when fatigued.

Hi, I was diagnosed with Duchenne as a child but a biopsy a few years later confirmed Becker. However, my disease course has mostly followed Duchenne. Anyone have a similar story?

Hiii I’m looking for an active discord server for MD. I have muscular dystrophy.

Hello!

I wanted to ask how do you approach dating and relationships?

Im 20 i have almost zero experience and im currently talking to someone and i dont really know how to approach it and how to talk about it.

I have fshd, i can walk, im not really tired, i have severe scapula winging, my arms are really weak and so are my abs, i cant run, i cant smile but i do most of things as other ppl, im just slower.

so i wanted to ask how should i approach it and when should i talk about it, i mean it is little noticable since i cant smile and i walk lowkey funny, my arms are weak and we know eachother longer and they have not said anything about me.

So i wanted to ask what are your experiences and how and when did you talked about it, im also scared of ther potencial reaction. thank u.

I have LGMD 2D, but it is quite mild.

I can mostly walk, run, hold down an office job, go out drinking and have above average muscle mass.

However, I experience daily fatigue, and sharp random muscle cramping pain in my thighs and arms daily.

I do not disclose to most people until we are really close I suffer with an MD.

I feel stuck between 2 worlds, of the disabled and able bodied life.

Mentally, because I get quite tired and am scared to be in pain randomly it puts me off starting hobbies or socialising with people because sometimes I might feel crap about 5 minutes into it.

Other times I may go out and be full of energy and have a great time.

But I don’t know when to push through or give up because my symptoms are so random and variable. I have no concrete day of pain or tiredness and so I never know what is coming that day.

I recognise my privilege in comparison to the average person who suffers with an MD, but I am annoyed that I do not have a consistent set of symptoms and thus it’s hard for me to confirm and identity a lifestyle for myself.

Finally, most people do not care / understand that you have a muscular dystrophy if you are not in a wheelchair or physically atrophied.

Even when I have explained to people I cannot help or action a certain task in work or family / coworkers question why I am not out like most young people partying and clubbing, I have to re explain I live with an MD which limits my energy.
They say they understand but just see a normal guy and ask a few months later the same things and think I’m faking.

I wonder if anyone else is on a similar boat to me, and if anything has helped them.

Has anyone done their own conversion of a van to a handicapped van? I just don't understand how these vans cost so much. Those who need them already have so many needs and expenses.

Hi everyone,

I hope you are all having a peaceful week.

I am a Product Design Engineering graduate student at the Glasgow School of Art (GSA) in the UK.

Currently, our design team is focusing on a project dedicated to children living with Muscular Dystrophy (MD). Through our academic research, we’ve learned about the incredible strength and resilience of these children, but we also realize that mainstream products and school environments often fall short of meeting their daily needs—especially when it comes to independent learning, desk-based activities, fatigue management, and everyday play.

We want to design something meaningful, practical, and truly helpful, rather than just imagining solutions from a classroom. To do this, we desperately need to learn from the real experts: the children themselves, their parents, caregivers, and teachers.

If you are a parent, family member, teacher, or adult who grew up with MD, we would be deeply grateful to hear your stories and experiences.

If you are open to sharing, we would love to know:

• The daily hurdles: What are the most exhausting or frustrating physical tasks during a normal day (e.g., getting dressed, holding objects, fatigue management)?
• School and learning challenges: How do traditional school desks, heavy writing tasks, or long classroom hours impact a child's ability to learn independently?
• Unmet needs: What products, tools, or adjustments do you wish existed to help these children play, study, and live with more autonomy and less physical strain?

You can reply directly to this thread, or if you prefer a private conversation (via Reddit DM), please feel free to reach out. Your stories will be treated with absolute respect, kept completely anonymous, and used solely for academic design research to create better solutions.

Thank you so much for reading this, and for your time and kindness. Wishing you, your families, and your little ones all the best, strength, and health.

Warm regards,

Product Design Engineering, The Glasgow School of Art

Hi, all. I’m a genetic counsellor & curious to know if you have visited a GC or are planning to. If you have visited one before, how was your experience w them? I’m curious to know how people w dmd feel about talking to GC’s and how their experience was because i hardly get real feedback other than the usual “that makes it easier to understand my report”. I want to reach out to a bigger audience w disorders and help spread awareness. Your input matters!

Hi everyone, before I start, I wanted to say that I might post a couple more questions in this subreddit if that’s okay. I was diagnosed with FSHD (Facioscapulohumeral muscular dystrophy) earlier this year, and I’m currently dealing with something that occurred recently and it’s really worrying me.

For almost a week, my entire left arm has been numb, extending into my shoulder blade and the left side of my neck. I woke up last Monday morning with the arm numb and initially unable to use it properly. I’ve had episodes like this before, but they always went away within a few hours. This time the numbness hasn’t gone away, and I feel like I’m losing some strength in the arm.

Has anyone with FSHD experienced something similar? And knowing that I have FSHD, what should I be doing or who should I be seeing about this? Should I be looking specifically for a neuromuscular specialist, neurologist, PT, or someone else?

I’m currently in Armenia, so I’m also trying to figure out what kind of specialist I should be looking for here.

Hello all,

I was recently diagnosed with LGMD2A/R1 (I believe, it is CAPN3 and Google says that's 2A/R1). So far neurologists have not been helpful, no advice given on maintaining health or what to expect. I understand this may be because there is no known treatment and there is quite a bit of variation in progression between people, even amongst siblings.

I would say my onset of symptoms is hard to pin point, when I was a child I didn't have any issues with physical activity. I would wake up in the middle of the night a few times a year with horrible shin pain, which we assumed was "growing pains". Around 25yrs old I began to have severe joint pain in my knees, elbows, wrists, ankles, hips. I developed psoriasis and was subsequently diagnosed with psoriatic arthritis, after quite a bit of push back to the doctors that my pain was not normal. Biologics for psoriatic arthritis helped my joint pain. Meanwhile my CK had gone up to 400-900 (not high compared to a lot of you, but out of normal range). I had seen Neurologist for CK level, even told him years ago I feel my shoulders are weak such as when lifting above my head to do my hair, nothing comes of it.

Fast forward to this last year, I had been actively going to the gym since June 2025 to March 2026 with minimal improvements in muscle strength in my hip abductor exercises and shoulders. I did go up on weight for back, chest, other leg exercises such as deadlifts. I noticed I wasn't seeing as much progression in how I looked regarding muscle building, but chalked this up to maybe I wasn't eating enough calories or being consistent enough. Around June 2025 my AST and ALT began to elevate, I didn't connect this to my addition of exercise. My rheumatologist thought it was elevated due to my biologics, as it can elevate liver enzymes.

February 2026 my little brother gets his diagnosis of LGMD. I get tested shortly after and I have it too, which was shocking to me but the puzzle pieces of things I was struggling with at the gym made sense. Suddenly after the diagnosis I begin to struggle a little, my calves are tight and hurt at least half the days of the week, my shoulders hurt and get tired easily, lower back pain, longer walks are really tiring for my legs and they feel heavy. I am constantly exhausted. I am high functioning, but definitely cannot do work that requires manual labor, luckily I work a desk job. Even my desk job causes me pain, there is no configuration for my desk that is comfortable. Driving can be uncomfortable, I hold the steering wheel at the bottom so I don't have to elevate my arms and strain shoulders. Pushing the pedals causes pain in my calf. All of the tasks are not SEVERE pain, but it's a 4/10 that sucks to live with baseline. I FULLY understand my situation is better than others, I appreciate every day that it could be worse, but it's been getting me down.

I still go to the gym, the doctors told me weight lifting is okay and to exercise "like any normal person" but not push myself too hard. I don't find NOT going to the gym improves my pain, so I still go, to try to maintain muscle. I have a handicap placard so I know I can easily get back to my car after working out legs, and only use it when there's ample spaces for those who may need it more. Doctors said to stay hydrated, didn't have any suggestions on protein intake or vitamins but I am trying to get ample of both.

I'm scared what the next years will bring, I don't want to lose my ability to do different tasks and I don't want to rely on my fiance to do more things. I'm really curious what others have experienced with later onset of symptoms and progresssion, perhaps what they're doing to help themselves on a daily basis?

I hope this post isn't too long and drawn out, I appreciate anyone who reads it.

Thanks ❤️

A Duchenne diagnosis is a bomb detonating inside your home, leaving you entirely helpless. For decades, families were forced to watch young boys slowly slip away, trapped in a progressive nightmare with zero treatment options.

The deep sadness turned into pure anger when a potential treatment finally came along. Instead of throwing us a lifeline, an FDA panel sat behind closed doors, coldly debating paperwork while our children were literally dying. Critics dismissed us as just a "desperate, heretical group of moms". They forced us to fight a fatal illness and a heartless bureaucracy at the same time.

Our fury eventually forced the approval of Exondys 51, the first-ever therapy for Duchenne. But it came too late. Most of the boys who inspired this fight passed away before the drug could reach them. This is the devastating human cost of regulatory delays. This story must be shared so no grieving mother is ever ignored by a broken system again!

Hii everyone iam 23 years old and I have Becker muscular dystrophy after crossing 20 my both legs stopped being able to walk and right now iam a full time wheelchair user I can still some what move my legs so I have a question that will it still keep progressing and will it really affect arms and shoulders and keep progressing through out the body or not . (Exercises/working out did not help much to stop the progress but I become pretty much in shape )

I believe that anxiety about the future is common among those with muscular dystrophy.

I will share my own modest way of coping with it, an approach that doesn't make the anxiety vanish, of course, but makes it more manageable.

I tell myself that there is no guarantee I will be alive tomorrow, so it makes little sense to worry about something that might never come to pass.

If there were anything I could do to mitigate future risks, I would certainly do it; but since there isn't, I must focus on the present day and the tasks at hand.

What are your ways of dealing with anxiety about the future?

Please delete if not allowed. My friend's child is in second place to be in an official comic book, go to comic con in LA, and also win a cash prize that would desperately help their family. It would mean so much for this sweet kiddo and his family.