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SMA Typing (as in type 1, 2, 3 or 4)
Years ago, for a brief moment, it was noted in my chart I had SMA type 3. The doctor claimed I’d “be dead by now” if I had type 2. Ever since the whole typing system seems faulty to me. On one hand, if I did have type 3 maybe I’d have a better prognosis. On the other hand, it would make getting the things I need more difficult.
For some reason, type 2 seems to be the sweet spot when it comes to insurance. Luckily for me, that type 3 notation was quickly buried by my neurologist and more knowledgeable doctors. I feel like need should take precedence over type though. Unfortunately, insurance doesn’t always see it that way. Often individuals with type 3 struggle to get coverage for items that would benefit them. If you’re type 1 sometimes your SMA is considered too advanced to benefit from certain things which is completely bogus. It’s easy for parents to focus on type as well when their attention should be on supporting their child regardless of ability.
I want to stress not to get hung up on SMA typing. As treatments emerge the SMA type system is evolving. I don’t think anyone can say if someone is a certain type they can or can’t do x y z definitively. There’s almost always an anomaly. So basing type on ability isn’t the best gauge. Basing it on SMN 2 copies isn’t reliable either because the quality of those copies makes a difference. I like to think of SMA as a spectrum. If that’s the case type 2 is smack dab in the middle. Where function is concerned a “strong” type 2 would have more abilities and a “weak” type 2 would have less function. Maybe your type would change throughout your lifetime. Just a thought. Of course with treatments, it’s a whole different ballgame. Frankly, I’d like to see the typing system thrown out the window.
Have you run into issues with being a certain SMA type? How would you like to see the classifications evolve?
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