Posts by Elizabeth Cook28

Muscle weakness—specifically that total lack of strength that leaves you immobile—combined with joint contractures and scoliosis. That’s everything. It might sound like a list, but it's enough to make you completely dependent on others for basic care. 😢

It is incredibly strange; I can't find any decent information on this anywhere. You'd think there would be actual articles available,

I’ve been dealing with this condition since I was eight months old, but fortunately, it's Type 2, which isn't life-threatening like Type 1,

The problem is, I can't find any decent information on it anywhere. Most of what I stumble upon is just scattered, rare snippets, and even then, most of it is in technical jargon that I struggle to wrap my head around.

Does anyone here know someone living with this specific diagnosis? If so, how are they managing? Are they actually out there living their lives? 😢