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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 4 replies, 5 voices, and was last updated 6 months ago by Dennis Turner.

  • Author
    Posts
    • #22227
      Marin Dabija
      Participant

      Hello, guys, so I’m not sure what disease do I have, muscular dystrophy or muscular atrophy. I live in Moldova. The medical care there is in bad shape.
      The thing is I have a brother, older than me, he went to Moscow some years ago(6-8 years, not sure) to do some tests on these diseases. The healthcare personnel from Moscow diagnosed him with Spinal Muscular Atrophy, but in my Medical Card it is said that I have Duchenne Muscular Dystrophy. As I know this is impossible(no one of us is adopted). Last year, both of us have done the test on Duchenne Muscular Dystrophy at some private medical company(I will send the name when if I found it). The test said for both of us that we don’t have that disease, but also in the result there was a text about trying other test methods, cause other test methods may show a different result.(We haven’t tried yet.)
      Also our symptoms are slightly different from the ones with those diseases. I mean we have muscle atrophy or degradation, but this process is much slower.
      I’m 19 years old, I can breath properly and I lost the ability to walk ~one year ago. My brother is 39 years old, and he lost the ability to walk at 20-25 years(I think) and he also can breathe properly.
      Can you guys say what do you think, which disease it may be? Can you recommend some companies which provide tests or better medical care?
      I want to know properly what disease me and my brother have.
      Thanks and sorry for my bad english.

    • #22230
      Alyssa Silva
      Keymaster

      Hi Marin. Thank you for joining us here and sharing a little bit of your story with us! Your English is just fine. 🙂 I wish I had answers for you, but I can tell you that spinal muscular atrophy affects everyone so differently. It’s very possible that you and your brother could have SMA, but only testing will confirm that.

      Here are some resources right here on the SMA News Today website that might provide you with more information: SMA symptoms and SMA diagnosis

      Please don’t hesitate to reach out to us with more questions. I’m sure others will reach out as well.

    • #22229
      Even
      Participant

      Hi, sma have “many” types, like 0-1-2-3-4, depending on the severity. Like for me who has type 3, I was walking, skiing etc. Started wheelchair when I was maybe 30 years old. You are welcome to email me if you want. [email protected] not often I use the web here. BTW, I live in Norway 😄

    • #22232
      DeAnn R
      Keymaster

      Marin, thanks for joining us.  From your description it doesn’t sound like Duchenne to me.  If your brother indeed has SMA it is likely you do as well.  SMA has a broad range, so it’s possible to have adult onset.  There is a myriad of diseases under the muscular dystrophy umbrella one of which is LGMD that mainly affects lower extremities.  You may also find support in this group https://musculardystrophynews.com/forums/

      Sorry, I don’t know the name of the specific genetic test that would tell you if it is SMA.  It would show the deletion of the SMN1 gene.

       

    • #22233
      Dennis Turner
      Participant

      I have SMA 3B meaning very late onset and slow loss. After being diagnosed in 1975, I was still able to walk, climb stairs, and most other things until about four years ago.

      Now I am in a wheelchair all the day.
      If your brother was diagnosed with SMA, it is very likely that this is your diagnosis as well.

      As others have said, every case is different as far as the course it takes, but feel free to ask questions on this forum, there are good people here.

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