SMA News Forums Forums Adults ​With​ ​SMA Disconnect Between SMA Types

  • Disconnect Between SMA Types

    Posted by deann-r on February 10, 2022 at 9:15 am

    As you may already know I’m not a huge fan of the SMA type system. While I understand it can be helpful in some instances, I feel it’s one of the driving forces creating a wedge in our communities. It’s difficult not to compare ourselves to other types. I think it also creates misconceptions. For example I get the impression that some think type 2 individuals are over represented. While I can see how that can look to be the case, and maybe it is the case based on the sheer volume of type 2 individuals, as a type 2 myself I know that isn’t my intention.

    What are other misconceptions? How can we do better bringing everyone together? I’ve long thought the SMA community is one of the most supportive communities around. What can we do to support you?

    lupa-f replied 1 year, 3 months ago 3 Members · 3 Replies
  • 3 Replies
  • blake-watson

    February 10, 2022 at 12:24 pm

    Yeah I agree. I think about the inaccuracy of the type system every time I mention my type. But I continue to use it because it’s the only shared vocabulary I know of to communicate SMA severeness. But I’d be down for some other language or terminology. I wouldn’t want conversation around SMA severeness to exclude anyone. I believe comparing functional ability is useful at times but too much emphasis on types probably overlooks the aspects of SMA we all have in common.

    I’m just thinking out loud here but I am interested to know what others think.

  • sasha

    February 10, 2022 at 12:50 pm

    I get the impression that some think type 2 individuals are over represented.

    Never heard that, but I guess it makes sense because type 1 were not surviving much until recently, and 3-4 are less severe (+ maybe less common?).

    Type 1 is supposed to be the most common type though, but maybe this forum is not popular among the parents.

    On some other resources (e.g. some Russian youtube channels) I actually saw lots of content mainly for type 1 (parents) like handling ventilators, non-verbal communication.

  • lupa-f

    February 11, 2022 at 3:22 pm

    I’ve mentioned it before, but as a type 3, I’ve never had to deal with many of the issues that type 2s do and it took me a while to figure out that’s why I’d get weird questions from doctors. I’ve had to push back against some doctors wanting to do tests and things on me that were completely unnecessary. I had a new doctor a few years ago wanting to do a bone density test and I had no idea why. I’ve never broken a bone in my life and have never had any sort of issue that would make that kind of test necessary. The only answer I got when I asked why was “just because” so I never did it.

    And then on the other side I have a hard time getting advice on how to do things because the solution is often “have your caregiver help you”, but I’ve never had caregivers. It’s always been frustrating when I would look up stuff on “independent living” and they would refer to caregivers doing things for you. That’s not independent to me, at least.