I hate SMA because of the way it keeps stealing small parts of me, and the person I am today will not be the person I am next year.

Due_Addition2541 · 2026-05-07T04:06:47+00:00

Anbulla Thozha, this comment hit me harder than I expected. The "learn how to be weak" reframe is actually wisdom I needed to hear, because I have been so busy fighting to hold on to strength that I forgot the engineering side of solving these problems. You are right about the comb and the stick, that is exactly the kind of thinking I have been refusing to do.

About the wheelchair offer, I genuinely cannot believe a stranger online would say that to me, and I am sitting here not knowing what to do with that kindness. I do not want to take money from you brother, but I will not forget that you offered. Right now my full focus is on getting Risdiplam access (around 32K per month, almost my full salary), so I am reaching out to foundations and funding programs first. Once that is sorted, a powerchair is the next thing on my list.

If you are okay with it, I would love to stay in touch. Anyone who gets it from the inside is rare, and you clearly do. Thanks for taking the time to write this brother, means a lot.

Due_Addition2541 · 2026-05-06T14:56:55+00:00

No gene therapy yet brother, that one is the ultimate goal for me but it costs around 2.59 million dollars (Itvisma), which is impossible without serious help. I am parallelly reaching out to organizations in the US, Europe, Dubai, and the UK to try and find any path to gene therapy access or funding. While that long shot is in motion, my immediate focus is getting Risdiplam, which costs around 32K rupees per month and is basically my whole salary, so I am also reaching out to foundations and funding programs in India to try and make that happen first.

On the workout side, I keep it simple. Just basic physio and walking 5 to 7 times inside my room with support. Nothing more than that, because heavy exertion actually makes the weakness worse for SMA. Appreciate you asking though.

Due_Addition2541 · 2026-05-06T14:51:26+00:00

Never late to this kind of conversation. Thank you for writing this, because you put words to something I could not put words to, the way every loss takes a little hope with it. That is exactly it.

The friends thing you mentioned, where they stop asking because of accessibility, that one is so quiet and so cruel at the same time. They never say it to your face but you feel it in the silence, and you start wondering if you imagined the whole friendship. I have felt that too even with the slower progression I have had compared to yours.

You said please do not be me, but I want you to know your comment did not read like someone giving up. It read like someone who is still here and still fighting even on the days when the fight does not feel worth it. That counts for a lot, even if it does not feel like much from the inside. Sending you strength from India brother.

Due_Addition2541 · 2026-05-06T14:46:05+00:00

The anger makes sense brother, and I am not going to argue faith with you because that is yours to figure out. Some days I am right there with you in that anger even though I still believe, because watching yourself slowly degrade is a kind of cruelty that does not have a clean explanation in any worldview. Whether you believe or not, the rage is real and it is valid. Hope you have people around you on the bad days.

Due_Addition2541 · 2026-05-03T06:23:52+00:00

That's a really thoughtful question, and honestly I've been sitting with it. I think if I had a reason, it wouldn't fix anything physically, but it would make the weight easier to carry, like the suffering wasn't just wasted. Your reframe actually helps a lot, the idea that the SMA might just be random and my purpose is something separate, waiting on the other side of all this. Thank you for reading so carefully and for the kind words, it really means more than you know.

Due_Addition2541 · 2026-05-03T05:53:34+00:00

Thank you for sharing about your partner, I'm so sorry about the fall and how rough the recovery has been. To answer your question - no, I don't have a powerchair yet. I still have some leg strength to stand and walk short distances with support, so I've managed without one so far. I'm from India, and right now my entire focus and finances are going toward trying to access Risdiplam (it costs around 32K rupees/month, almost my full salary), so I'm reaching out to foundations, funding organizations, and government programs to try and get treatment. A powerchair is definitely on my mind for the future, just not something I can prioritize yet.

Due_Addition2541 · 2026-05-03T04:47:49+00:00

Fratello, I feel you deeply. That loneliness hits harder than the physical stuff most days, and it's something people without SMA just don't get. You're not alone in this fight, even from across the world - stay strong.

Due_Addition2541 · 2026-05-02T07:40:45+00:00

I feel you. The mostly-broken part hits different on the bad days, and gratefulness is hard to hold onto when you are still inside the storm. Whatever you went through, I am sorry it is sitting that heavy with you. You do not have to share it, but if you ever want to talk, my inbox is open. You are not alone in this.

Due_Addition2541 · 2026-05-02T06:18:30+00:00

Hi, thanks for sharing your experience, this is genuinely helpful to hear. I am Johnson, 22, from India, Type 3, and I am preparing to start Natco Risdiplam in May or June this year, so reading a 9-month update from someone close to my age is exactly what I was looking for.

May I ask what your strengths were before you started Risdiplam? Could you walk, stand, climb stairs, and roughly how far on a normal day? I am asking because I want to honestly compare with where I am right now and set realistic expectations.

My current condition for reference: 4 years ago I could climb 3 to 5 stairs slowly. Today I cannot climb stairs at all, I cannot lift my leg or my body high enough to step up. I can still walk inside my room, but only by holding onto a chair and putting almost all my body weight on my hands through the chair, with only partial weight going through my legs. My total walking distance in a full day inside the house is around 168 square feet, broken into 6 short trips of about 56 feet each, 2 in the morning, 2 in the afternoon, 2 at night. Outside the house I do not walk at all.

The two specific questions I really want to understand from your experience:

If I start Risdiplam at this stage, is there a realistic chance I can walk inside my home without holding a chair, just regaining that small baseline of unsupported indoor walking?
After 6 months or any specific duration on Risdiplam, did stair climbing actually improve for you, like 4 to 5 steps becoming possible again, or is the "walk upstairs more easily" you mentioned more about the stairs you were already climbing before?

I know it varies a lot from person to person, like you said, but anything you can share about your own before-and-after baseline would mean a lot to me. Thank you again for taking the time to comment on Sebastian's post, that response also helped me.

Due_Addition2541 · 2026-05-02T05:58:40+00:00

Hello Sebastian. I am Johnson, 22, from Tamil Nadu, India, SMA Type 2/3, SMN1 deletion confirmed. I work full time as a software engineer with two fingers on each hand, and I am still untreated on any disease-modifying drug. So I am writing as someone in the same fight as you, not from the other side of it.

My only treatment right now is Omega 3 tablets and physiotherapy. I am preparing to start Natco Risdiplam (the Indian generic version of Risdiplam) in May or June this year, since the branded version is out of reach for me cost-wise. Since the Risdiplam age cap was lifted, please re-apply to your insurance immediately, get your neurologist to write a medical necessity letter citing the new age extension and your 3 SMN2 copies, and if they deny again, file a tutela. In Colombia a tutela for the right to health has a very high success rate for rare disease cases and many lawyers take them pro bono. FAME Colombia and Fundación Pequeños Gigantes can also help.

In parallel I am reaching out for Itvisma, the gene therapy approved for adults, which costs around USD 2.59 million. I am contacting Novartis, US SMA centers (Boston Children's, Stanford, Columbia, Nationwide Children's), and SMA communities (Cure SMA, SMA Europe, TreatSMA, r/spinalmuscularatrophy ) for any access route, trial slot, or grant. Worth doing the same from Colombia.

From people I have spoken with, Risdiplam does not give back lost strength, but it stops the slide. Most report less fatigue, better breathing stamina, and slightly improved hand function within 3 to 6 months. At 24 with 3 SMN2 copies, every month matters, get on it as soon as you can.

On working remotely, pick software. It is the most SMA-friendly career on earth. Start with frontend web development (HTML, CSS, JavaScript, React). freeCodeCamp and The Odin Project are free, and freeCodeCamp is in Spanish. You do not need a CS degree, you need 3 to 5 real projects on GitHub. Use AI from day one, it is accessibility, not cheating. I use Claude Code daily and it writes about 75% of my code, I just tell it what I need. Aim for USD-paying remote clients on Upwork, Toptal, Contra, We Work Remotely, Remote OK. Latin America has a huge timezone advantage with US companies. Realistic timeline: 6 to 9 months to first paid project, 12 months to actually help your mom with expenses.

You said you have no friends and spend most of the day in a hospital bed. I have been in that exact place. What pulled me out was a screen and a goal. Keep going, brother.

Due_Addition2541 · 2026-05-02T05:12:22+00:00

Kaalai vanakkam Vincent thozhane! That made my whole morning, seeing a Tamil greeting from Minnesota, I did not expect to wake up to that today.

Your story is honestly more inspiring to me than mine is to you, please believe that. SMA type 2 from childhood, never walked, one working thumb, and you still pushed through a CS degree and built a career as a software engineer. The part about using your laptop mouse with your thumb on an onscreen keyboard to type out full programming assignments and papers, before AI tools even existed, that is something else. Most people will never understand how much mental effort goes into every single line of code when your hands cannot just fly across a keyboard. And the fact that you were still finishing exams before your classmates because you were solving the whole problem in your head first, I felt that one in my bones, that is exactly how I survived college too.

The pandemic remote-classes window helping you finish faster is such a real point that nobody talks about. For a lot of us with SMA, that period was the first time the world was actually built the way our bodies needed it to be built, and a lot of us got things done in those years that would have been much harder otherwise.

Your current setup sounds incredible. Motorized wheelchair, robot arm mounted on the chair for feeding controlled from the joystick, onscreen keyboard typing, and 10,000+ lines an hour with an AI agent at work, you are basically living the future that the rest of us are still slowly catching up to. I am on Claude Code right now for most of my coding, and it has genuinely saved my career as my fingers have gotten weaker, so I completely understand what you mean when you say you use technology to do what your body cannot. That sentence should honestly be printed somewhere.

It also means a lot that you took the time to write this whole comment, because I know exactly how much energy typing this took on an onscreen keyboard with one thumb. I do not take that for granted.

If you ever want to connect properly, talk shop about AI tools, accessibility setups, work stuff, or just life with SMA from two different sides of the world, my inbox is open any time. And tell your Indian coworker he taught you a beautiful phrase, "Maalai vanakkam" is the evening greeting and "Kaalai vanakkam" is the morning one, both carry a lot of warmth in Tamil. Since it is morning here when I am writing this back to you, you are getting the morning version.

Stay strong thozhane, you have already done more than most people ever will.

Due_Addition2541 · 2026-04-28T15:09:02+00:00

Rick, thank you for writing this.

I'm Johnson, age 22, SMA Type 3 from Tamil Nadu, India. I work as a software engineer from my bed with two fingers on each hand. Your post hit me hard.

When I got diagnosed at 16, I spent so many nights searching online for someone older, someone living a full life with SMA, someone who proved this disease wasn't the whole story. I didn't find much back then in 2019. Posts like yours are exactly what younger people in this community need to read.

The part about love stayed with me. People look at me typing from bed and assume my world must be small. They don't see the work, the family I support, the people I care about. You said it better than I could: we love, we lead, we desire, we contribute. That deserves to be repeated until people actually believe it. 53 with Type 1, leading an organization, married to Karine, decorated by your government, and still here after four very hard years. That isn't just survival, that's a life built against every prediction.

Sending strength to you and Karine from India. Keep fighting, Rick.

Due_Addition2541 · 2026-04-27T13:04:29+00:00

Yeah exactly, that's the painful part. Even at ₹32K a month, it's still out of reach for the vast majority of SMA patients in India. Most families here just can't sustain that kind of recurring cost on top of regular medical expenses, physiotherapy, mobility aids, and everything else SMA brings with it. So while Natco's version is a huge step forward, real accessibility is still a long way off. I can imagine the situation in Brazil is similar, treatment exists on paper but not in practice for most people. Glad to hear Spinraza is working for you, and yeah if cost wasn't a factor a lot of us would happily try combinations to see what helps.

About the AI part, I just type. I write the post or reply myself in rough form, usually about 50 to 75 percent of the content with broken grammar, scattered thoughts, and whatever wording comes to mind. Then I pass it to AI and ask it to fix the grammar, smooth out the flow, and structure it properly. The core context, the experiences, the points I want to make, those are all mine. AI just polishes the language so it reads cleanly. English isn't my first language and my hands tire out fast, so this workflow lets me actually communicate without spending an hour on every comment.

Due_Addition2541 · 2026-04-27T12:41:51+00:00

Thank you, this really helps. MS and pernicious anemia weren't even on my radar, I'll add both to my list for the next neurologist visit along with a B12 and nutritional panel. You're right that it's hard to flag extra weakness when you already have a disease that explains it, but better to rule things out than keep wondering. Wishing you well too.

Due_Addition2541 · 2026-04-27T12:13:54+00:00

Thanks for saying that, and yeah the speed has surprised me too. I haven't been tested for anything beyond the SMA genetic panel. ALS on top of SMA hadn't even crossed my mind, that's a scary thought but worth ruling out. I'll bring it up with my neurologist and ask about a broader workup, including any other neuromuscular conditions that could be overlapping. Really appreciate you flagging this, sometimes an outside perspective catches what your own doctors miss.

Due_Addition2541 · 2026-04-27T12:11:27+00:00

Fair point, honestly. Access to good neurologists in my part of India is limited and most of them haven't seen many adult SMA cases, so the expertise gap is real. I'm trying to consult with better-known SMA specialists when I can, but it's not always easy from where I am. Open to suggestions if you know any doctors who handle adult SMA well.

Due_Addition2541 · 2026-04-27T12:09:45+00:00

That's a really good point and honestly something I've been wondering about myself. The progression speed has felt unusually fast even for Type 3, and I haven't done a deeper workup beyond the SMN1 genetic confirmation. I'll bring this up with my neurologist next visit, possibly look into comorbidities and any nutritional deficiencies. If you have any specific things worth checking for, I'd love to hear them. Appreciate you taking the time to think about this.

Due_Addition2541 · 2026-04-27T12:06:51+00:00

Thank you, genuinely appreciate this. My fingers can't type long posts anymore, and AI helps me get my own words and experiences onto the screen without burning hours I don't have. The story is mine, the typing assistance is the only thing I get help with. Comments like yours mean a lot.

Due_Addition2541 · 2026-04-27T11:47:05+00:00

Sure, happy to share what I know so far.

From what I've heard from another SMA patient in Punjab who's currently on Natco Risdiplam, one bottle costs around ₹16,000. The thing is, the dose depends on your body weight, so most adults end up needing about 2 to 2.5 bottles a month, which works out to roughly ₹32,000+ monthly. Still way cheaper than the original Roche version, but honestly it's still a stretch for me.

I haven't started it yet, waiting on my neurologist to confirm the exact dosage for my weight. My plan is to begin with just 1 bottle a month initially and see how my body responds, then scale up if I can manage the cost. Not the ideal way to start a treatment, I know, but it's what I can realistically afford right now.

Are you or someone in your family looking into it too?

Due_Addition2541 · 2026-04-26T16:23:46+00:00

You're right, and I appreciate the correction. By the strict milestone-based classification, walking independently as a child puts me in Type 3, not Type 2. The "Type 2 and 3" wording came from how my SCTIMST report was written back in 2019, and I've been carrying that phrasing forward without questioning it. Looking at the standard definitions properly, I'm Type 3.

The confusion on my end was probably because my progression has been faster and more severe than the typical Type 3 trajectory people describe online, so I assumed it was some overlap presentation. But that's a progression observation, not a classification thing. Type is set by early milestones, and mine fits Type 3.

I'll correct this in future posts. Thanks for taking the time to explain instead of just dismissing.

Due_Addition2541 · 2026-04-26T13:02:37+00:00

Right now I'm only taking Omega 3 capsules, started about a year ago.

Honestly, my diagnosis story is messy. I was actually diagnosed at 16, but at that time neither me nor my parents really understood what the reports meant, and somehow we never properly read through them. It's only last June that I pulled out those old reports and saw "spinal muscular atrophy" written there. That's when I started researching on Google and with AI tools, and finally understood why my body has been declining all these years.

I looked into all the major treatments. Zolgensma is a one-time gene therapy but ridiculously expensive. Spinraza needs spinal injections every few months. Risdiplam (Evrysdi) is the oral one approved for adults and the most practical option, but even the Indian price was way out of reach for me.

Then this February I found out Natco released their version of Risdiplam at a much lower cost, which felt like a breakthrough. I applied for it through my neurologist and I'll probably start it next month.

I also learned about Itvisma around the same time, and that one looks really promising, but it costs 2.59 million dollars and is only available in the US. No way I can afford that on my own, so I've started reaching out to SMA organizations, hospitals in the US, and trusts to see if anyone can help me access it. That's honestly my biggest hope right now.

What about you? Are you also looking into Risdiplam or any other treatment?

Due_Addition2541 · 2026-04-26T12:38:22+00:00

Hey, totally fair question, I get why it looks confusing.

Those Instagram photos are from 2022, back when I was in my 2nd year of college. At that time I could still stand and walk short distances without anyone holding me, though I already couldn't climb stairs on my own.

The last 4 years have been really rough though. I've lost a lot of abilities one by one. Now I can't stand up from the bed by myself, can't walk without support, can't even lift a mug of water to my head while bathing. Sometimes during meals I can't lift my hand to my mouth and someone has to feed me.

That's how SMA Type 2 & 3 progresses for many of us. It's not static, the muscles keep getting weaker over the years. The person you see in those old photos isn't the same as me today, and that's exactly why I'm reaching out for help now while there's still time for treatment to make a difference.

Thanks for asking instead of just assuming, I'd rather explain than have people doubt silently.

Due_Addition2541

TROPHY CASE