Disability Rights

What does a Cure for Spinal Muscular Atrophy Mean?

A few months back, I read an article on Spinal Muscular Atrophy research. Considering I have Type III of this degenerative, progressive muscle disease, I try to keep up on all of the research news. One thing that caught my attention was a statement that one in my position doesn’t want to imagine is true, for fear of getting my hopes up only to be disappointed. This statement made the claim that a cure for SMA will come in the next five years.

All of this fear and uncertainty and hope floods through me at the thought of a cure. What does this mean for those of us with SMA? What will a cure do for us? Will it reverse the muscle weakness? Will it make our muscles stronger? Does this mean some of us will walk? What will a cure do? That uncertainty is nearly as scary of the prospect of being promised a cure that never comes.

Don’t get me wrong. I am not a whiner. I don’t want to say I don’t care about being in a wheelchair, because if I had the choice of wheeling or walking, I’d choose walking. But…I have accepted my disability. I don’t believe in whining about the fact I cannot walk. What a waste of time. I have no complaints. I attempt to adapt and improvise to whatever is thrown at me.

The uncertainty is what I am the most worried about. Nobody can seem to tell me what a cure means. Does it mean I’ll be putting my life on hold to go through PT and strength training? Does it mean I can even recover any muscle strength? Some have told me I’m hopeless. At 28, I’ve had too many of the effects of SMA wear and tear on my body, and any cure is too late in the coming. Is it? Would I be better served if a cure had come a decade earlier?

I guess the scariest part is the what ifs. I’d love to see the youngest generations benefit from a cure. I’d also like to know if I should maintain hope, or if I should just give up and realize this is as good as it gets, and living an adapted life, though inconvenient, is the best way to live. Anyone have any ideas, of what a cure means for those of us with SMA? If you do, I’d love to know.

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17 comments

  1. I am 19 and have type III as well, was diagnosed when i was 16 when i started getting weaker. i can still walk, but need a stick, though i need to get lifted out of anything lower then a stool. I have heard the same things and following a couple of sites, and have been wondering the same thing. what does the treatment do? does it completely reverse it? or just halt it from getting any worse… im sure by the time the treatment comes i will be in a wheel chair by then. but the hope of the treatment is what makes me more cheerful in a day. any hope is better then no hope at all, or else id be alot more depressed.

  2. Hiya, I also have Type 3 SMA and am very excited about the recent breakthroughs in finding a cure. I find that any extra help will be a benifit, I haven’t walked since I was 13, it would be nice to give it a go to get on my feet again if there was help with a cure. It would be great even if I became less tired after doing simple tasks or even to have more strength in doing simple stuff like sitting up and transferring from my wheelchair. I think when a treatment does come everyone with SMA should make the most of it by doing what they can to get their bodies in the best shape possible! peace out 😀

  3. Hey David. Thanks for your comment. I agree, I’d very much like to sit up on my own and be able to help with transfers. I do believe this will be positive for those of us with SMA, but I’m not exactly sure what to expect, so I guess that was more the point of my post. Fear of the unknown perhaps?! Here’s hoping it helps us all!

  4. Hey Anthony. I was diagnosed at 4. I went into a wheelchair at 16. I know what you mean about wanting to hope for the best. Hope is a powerful thing. It is better than giving up all hope completely. I think its good to stop all progression period, but also, reversal would be an added bonus. We are thinking on the same wavelength.

  5. I’m also 28 and wonder the same thing. I would say that you should dream for the day when there is a cure but not long for it. OR anoher way to say live in the present and hope for the future. I just saw an article here http://www.stemcellschina.com/index.php/en/sma—ms.-loredana
    I have to admit my mind was racing and my eyes almost cried when I read the improvements. I would love to be able to walk again (stopped walking around age 11). I would love to be able to chase my daughter around and dance with my husband. Wonderful dreams and they in a way keep me going.

  6. Hi. I’ve got SMA too. My understanding is that most of SMA specific research is more geared towards treating children before they lose to many lower motor neurons, or preventing further loss in adults. But I think that there’s a lot of other more general biology and biotechnology research in the pipelines that will help adults with SMA in one way or another. If you’re interested in helping or learning about research the international SMA patient register might be of interest (https://smaregistry.iu.edu/)

  7. Dominick

    Howdy! I see that you are a Detroit Tiger fan.
    They are having a great year. I’m a Texas Ranger fan.
    Maybe one of them will make it to the World Series this year.
    If a cure comes, then you can deal with it at that time.
    In the mean time learn from the past, enjoy today, and plan for tomorrow.
    Never…. give up hope. Keep your dreams alive.
    I have 3 wonderful kids that all have SMA. My oldest daughter turns 30 today. My two sons are 28 and 24.
    They are all very successful. None of them ever walked.My youngest started driving his wheelchair around at the age of 18 months.
    We do things together all the time.
    If you are ever down in Texas, please look us up.

    Tom

  8. Dominick

    You can email anytime you need to.

    Tom

  9. Thanks so much Tom!! Go Tigers! I love to hear all of the great things those with SMA are doing. That’s the kind of message we need to get out to society to make them see us as people first and not merit us by our chairs!

  10. Hi I was diagnosed with SMA when I was just a few months old and I am wondering of there is a surgery to help SMA?

  11. None to help the actual disease, but Spinal Fusion surgery can help scoliosis caused by SMA, and things like that.

  12. Hi
    My son has sma III he was diagnosed at 3, he is 6 now. I fear him not waking up not walking everyday, he already miss out on so much of his childhood, but he stay uplifted and positive. I hope there will be a cute in the near future to help all of you. That would be a tru blessing….

  13. i do not have sma but i want to know is there is something that can help it i fear my little cousin has it can i get some advice please

  14. Hi Christopher – You can teach others around you that those with SMA are like everyone else. Educating others about SMA is a great start. Also, if you want to volunteer, get in touch with organizations like Families of SMA to see what you can do to help!

    Good luck and thanks for the comment!

  15. Hey Dominic, my name is George. I am 22 years old and I have a daughter that is diagnost with sma type 1. She is 1 year and going on 2 month. When doctor told me that most infants with type 1are more likely to pass away before age of 2 my heart has stopped. Seeing that five years is a long time I still manage to keep my hopes up. Don’t let your hopes down. “Alone you fall , together we stand..” Hopefully one day my daughter will be able to say the same thing by my side… I pray for you and everyone else with difficulties in life.

    God bless!
    George A

  16. Hello, I was diagnosed in 1964 with SMA type 3 at the age of 2. I am here to say don't dwell on the "what if's". Get out there and do what you enjoy now. Make the best of your life no matter what comes along. I currently have one full time career and two part time jobs – love them all! I don't see a cure for me but it would be nice if I could use a washroom alone 🙂 I found this site while doing research for my new blog and found it quite amazing. If you wish to see more please stop by http://www.abonnieview.com . – Ontario Canada

  17. Hey Dominick, I just wanted to let you know I enjoyed reading your blog. It’s not easy finding personal stories on people LIVING with SMA type III. Great job!

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