Having HIBM sucks. And there's no cure as yet. I keep reading that there may be a cure soon but there isn't now. Come on, researchers. Get the cure already, or at least get a therapy going on.
This is so less sexy than it seems. My hands don't work when they get cold. Someone always has to put my ipod on my shirt for me. My right pinky doesn't work, nor does my right shoulder or my right quadricep. I try to bike every day to strengthen my quad and my glutes, because that's what my team at NIH told me to do.
Where is the gene therapy? I want an answer, I want a cure.
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