Hi, I’m an 18-year-old guy from a small village in India, and I’ve been living with FSHD. Honestly, I don’t even know why I’m writing this. There’s no deeper meaning or purpose behind it—I just felt like putting my thoughts somewhere.

I left school two years ago because of my condition. There’s hardly any awareness or support for something like this where I live, and it felt like there was no point in continuing. In school, I was always alone. Everyone else would go out during breaks, but I would stay behind, sitting in class, feeling out of place and different. Since then, my life has been on repeat: I wake up, stay in my room all day, watch reels for 13-14 hours, and then sleep. That’s it.

My parents don’t really know what FSHD is, and I’ve never told them much. I don’t want to burden them with my condition. I try to do what I can on my own, but it’s hard. I can still walk, but it’s becoming more difficult every day. I don’t want to lose that. The thought of being in a wheelchair forever honestly terrifies me. If I lose the ability to walk, I don’t know how I’d cope. I feel like I’d be done.

I usually stay in my room alone, away from others, because I feel like they might judge me.

I don’t know what my future holds. Will I have to keep living this same repetitive life for the next 60-70 years? I have no idea.

I’m just putting this out there because it feels like something I needed to say. If you’ve read this far, thank you for your time.

I did a genetic tests and one of the results was a "likely pathogenic" mutation in the ttn gene, on the document i read that it has connections to muscular dystrophy so i kept looking online about it. I innitially did this genetic test because of muscle weakness, constant body pain, difficulty walking/bending down/carrying things. I remember having this issue since childhood but im recent years its progressively getting worse to the point of using mobility aids so i can walk without falling of injuring myself. Is it possible that this gene mutation is relevant and some sort of muscular dystrophy could apply? If so what sort of doctor should i go to? Not trying to ask for medical advice, just wanted some opinions from people who have muscular dystrophy themselves. If this isnt allowed here i understand and can take the post down.

I use marijuana twice a week sometimes more, the point is that I would like someone to tell me if anyone knows if it directly affects my strength and my muscles (lowering my strength faster since with each year my strength always decreases more and more ) when I consume it it is because I will no longer do anything that involves things like getting up from the bathroom or something like that since marijuana acts as a muscle relaxant and makes my strength decrease during the time that I am under the effect.

Since it's gotten colder here my muscle soreness has gone up, nothing crazy but very annoying at times, any other meds that work better than ibuprofen?? Any prescription meds i can ask my doc about?

Hi! I was wondering if there’s any females on here with muscular dystrophy?? I feel like I’m never taken seriously and dismissed because I’m a woman with MD. I’ve even been told by DOCTORS (my previous neurologist) “only men have muscular dystrophy” which is NOT true. I have EDMD4 (SYNE1 mutation) in case anyone is wondering.

Older DMD patients who took/take steroids. Did you go through testosterone therapy or did you hit puberty without any intervention if so at what age?

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Has anyone tried using testosterone to rebuild muscle. I haven’t asked my doctor but I was thinking of trying it?

Can i take mestinon, I'm diagnosed with lgmd2b... And condition is getting worse... Can it help?... As it is used for myasthenia gravis.. To treat muscular weakness etc etc... Had anyone tried it?

Hi! I'm 25M with DMD.

For the last couple of months I've felt a bit down having realized I basically never smile (unless I'm really drunk) and always look kind of sad. Also, realizing it's a consequence of my weak face muscles didn't exactly make me feel better.

Last week I gathered enough confidence to ask my closest friend about the matter (I guess as a man I'm lucky to even have friends I can discuss these kinds of topics with). What he told me was basically that I really should try to smile as it releases endorphins that make you happy.

So I went to work using my phone camera, trying to find out how I can still achieve a nice warm smile that doesn't look creepy/funny. Over a few hours I probably took a few hundreds selfies, constantly discussing which looked good and which looked bad together with my friend.

Since then, I have tried to put my training into action whenever I come across strangers. Today it finally worked out. As I was driving home from the hospital in my electric wheelchair, I saw a gorgeous girl around my age and started smiling at her. To my surprise, she smiled back at me and we even made eye contact until we passed each other.

Writing this a few hours later I still can't stop thinking about it and how happy it made me feel, as most people use to just look the other way when they see me. This girl just made my day.

I hope this can be an inspiration both to others with MD that smiling is worth the effort even if it's a bit uncomfortable for your muscles and to others that a smile can make someone's day, especially people who might not often be smiled at.

TL;DR Felt down about never smiling, friend told me it's worth it even if it requires some work, decided to practice and today it paid off when a gorgeous girl smiled back at me

It needs to be pretty cheap but it has to last

I'm 22 years old and I have Duchenne dystrophy, I have chronic heart failure and lately I can't even sleep well. How are you coping with the lack of energy?

I'm from Chile

I put on a ton of weight when I went thru months of depression with alcohol and over eating(was always a bigger guy) but I'm better now, im considering the surgery because where I have LGMD I don't want to be at a point in the future where I need help getting around being as big as I am..but with weight loss surgery comes muscle loss which is what in afraid of, my neurologist has no clue how much it would effect me nor does the ppl i talked to at the weight loss center they just said you have get in alot of protein daily to keep the loss at a minimum..I also have sleep apnea(on cpap)and hight blood pressure(on meds)so the surgery would help with those as well...any thoughts? I'm 41 and can still walk around fine but my arms and range of motion aren't good/weak

I have FSH MD and pain in my knees and my back is getting worse. My physiotherapist suggested starting cortisone, but I wanted to get a second opinion. My neurologist mentioned that cortisone can significantly weaken muscles, so it should be a last resort. Instead, he prescribed me duloxetine, saying it would boost my energy, help me with pain and make me feel better overall. I have a mild fear of taking medications but I plan to try this one. I’d like to hear about your experiences with it as well.

Our family's world has been turned upside down with two young boys, ages 3 and 6, recently diagnosed with Muscular Dystrophy (MD). We've been referred to Children's Healthcare of Atlanta (CHOA) for their care:

• Experience with CHOA: If you've had experience with CHOA, particularly with MD, how was it? Are there specialists we should seek out?

• Support and Resources: What kind of support does CHOA offer for kids with MD? Any local groups or resources in Atlanta we should know about?

• Advice for Newbies: What did you wish you knew when you started this journey? How should we approach discussing this with our young sons?

Any insights or personal stories would be greatly appreciated. We're trying to arm ourselves with knowledge and support for what lies ahead.

Thanks for any help you can offer. My wife and I are dealing with this in two completely different ways, unfortunately, but I understand. I just want to prepare and try to get a plan together.

Anything would be amazing. I have all the genetic information I could get from the neurologist, but they didn’t know as much as I hoped. Have to wait until first appointment at CHOA in March to be able to get questions answered.

Thank you again.

does anyone here have any experience with Duvyzat? my sons neurologist wants to put him on it. I am a little nervous about having to have blood drawn every two weeks for three months because of platelet levels. I am just wondering if anyone here is on it and how it seems to be going

Hey everyone. I have a sibling with DMD. He is pretty much unable to do anything on his own except feed himself, urinate in a urinal, brush his teeth, very minimal effort tasks. His hands often cramp up as well sometimes. I’m writing this to see if there are any gadgets, tools, equipment, etc that could make simple things easier for him and for my family. He does not have a home aid/nurse, so it’s my mom and I helping him full time and my mother is extremely burnt out. I work full time so I can’t do much during the day for him.

My husband and I are getting him an Alexa for Christmas with some smart plugs so he can turn things on by himself. That’s all we could really think of to be honest.

Anything is helpful to give him even the slightest bit of independence. Thank you all 😌

The ones I know are prednisone, Deflazacort and Translarna, but what other medications is there available? And what kind of medications are under development and are close to come out?

Please help diagnose me if you have had a similar experience or know of this situation.

27 yo Male, Symptoms: started in April and got progressively worse, especially the past two weeks; extreme muscle, weakness, fatigue, joint pain/instability, pain with motion, tight muscles, I have no ability to flex my feet. It makes my two tendons on top of my foot feel like they’re going to rip off of my foot. I feel like my nerves are pinched in my brachial plexus underneath my armpit, which causes neuropathy down my arm, specially my pinky and ring finger become numb and completely weak. Every time I move, it feels like if I stretch a muscle it becomes useless after the fact. I can’t climb stairs on my own or barely walk without pain. I have sciatica like symptoms and I have chronic neck and back pain. I have been doing physical therapy since April and I’ve only gotten worse eating well plenty of protein doing all my exercises. I do you take anxiety medication. I have to lay in bed most of the day and get up periodically to get some movement in but every time I move I just get angry because it’s so painful and I’m so weak and tired. I can’t drive or work or go back to school. I can’t hold a water bottle for more than a couple seconds without my wrist feeling like they’re gonna dislocate. Walking and even standing hurts just because my ankles always feel like they’re slightly sprained.

Test results: MRI of spine imaging does not show any compressed nerves, but I do have bulging disc in my neck and back and arthropathy. No inflammatory markers on blood test CK levels normal, B12 normal. -I have an EMG scheduled for early December -I have a rheumatologist appointment scheduled fairly soon -I have an endocrinologist appointment scheduled fairly soon too

Not being able to function normally is really stressful and I wish I had some answers. Anything helps. Thank you.

Is anyone in the edgewise study for Sevasemten or have a son in the study (that knows they’re getting the medication)? How has it been going? How are you/they feeling? Are we feeling hopeful that this could be a good treatment option to truly slow or stop progression? I’m trying to be optimistic that there will finally be things coming out for Becker or any MD that will actually be a true treatment leading to a more “normal” and mobile life.

I apologize if I post too much in this group. I am going a little crazy after my son's DMD diagnosis. My question is, does anyone at all know why lower deletions (mostly 1-17) get excluded from so many clinical trials?? Thank you

Exercise is supposed to make you feel good but honestly I don’t feel good at all. The fact we can’t push ourselves too hard or have to use the lightest weight so we don’t cause more damage to our muscles is just kinda depressing. I have been exercising for most of this year and see no improvement in strength at all. I rarely go to the gym now because l just feel so defeated. I was losing some weight (down 20lbs) so that was nice to see a difference in at least.

I would love to leave the gym and say, wow that was a good workout but it’s hard to feel that way when you know you won’t get stronger from it. I know I should be exercising anyway to preserve my muscle yet it’s still so frustrating. And I should be grateful I am still able to drive to the gym and use the equipment and sauna but struggle with it. I am not sure if others feel this way but it would be nice to know what y’all experience with exercise. I would really appreciate some advice on how to tackle this issue and hopefully change my mentality on all of this.

So winters have come and this disease sucks, back pain has become a daily routine.

My sibling makes of mine as I can't run or walk properly so I don't talk with her at all since months.

I have no irl friends only online and all are busy. In college no friends as the talk is only related to study.

Idk next year my graduation ends don't know what I will do due to this pain and shit. What if I couldn't use my laptop as I'm learning tech skills.

So yeah it's 12:56 am I am writing this post as I had a night flare up. Hope so I could sleep.

So yeah this is my life.

Has anyone been described with fortisip protein drink and has it helped in any way ?

Hello everyone! I’m writing an Informative Speech and I’d like to write about MD, specifically FSHD or any other non-Duchenne’s types. I’d like to focus on things people affected with FSHD would like for unaffected individuals to know, such as that Duchenne’s is not the only type of MD and the symptoms can be quite different.

I take care of someone with FSHD who has another family member in-house that is also affected. I have often been told that they feel underrepresented when people talk about MD because they never talk about anything except DMD.

This is an informative speech, so my goal is mainly to educate and shed light on a community. If anyone can offer me any insights into things I ought to cover, I would so very greatly appreciate the feedback!

I have been reading up on this treatment as they are currently recruiting for their clinical trials, and are nearly complete. Has anyone had any experience with this treatment?

I recently learned through a prenatal genetics screening that I am a carrier for DMD/BMD with a deletion in exons 49-55. Unfortunately, my sweet little boy tested positive for it as well through an amniocentesis.

We’ve spoken to different genetics counselors (who have all been so wonderful to us) but the deletion was only mentioned in one piece of medical literature and one organization had two people in their database with the same deletion. We have no idea what the deletion could mean.

We’re trying to make accommodations and plans for our little boy so we can be the best parents and know what he’s going to be facing and what his needs may look like. While it’s an in frame deletion they still can’t be certain if he would present as DMD or BMD. Since there’s essentially no information about our deletion, I was just wondering in general what some of your experiences have been like as someone impacted?

As a parent, one of my biggest concerns is my baby not having friends if he’s the “wheelchair kid” and being casted off since people can be so cruel.

Are there things you feel like would be essential for me to know to make sure he feels supported and all his needs are met?

Thank you so much in advance for anything you’re able to share.

My friend has three sons all with duchenne muscular dystrophy, my two sons are very good friends with the eldest and he is 7 and is starting to have some heart problems. We try and limit playdates to not be too active as when we've done things like a jump park within 20 minutes they're done, so it's hard finding things to do with all 5 of the boys. I want to know how to best be supportive. I explained to my children that one day they'll be in wheelchairs (my friend thinks her 7 year old will be within the next year or so ) and my boys seemed to understand and my one offered if " he ever gets too tired I'll be happy to push him around" how can I be supportive without coming off in a way that would seem like I feel bad for my friend and her children?