How I follow muscular dystrophy research


Frankly, I don’t actively follow muscular dystrophy research.

I used to. But I don’t anymore.

Twenty years ago there was no internet and I remember one day my mom came running out of my grandma’s house to tell me there was going to be some news story about a treatment for muscular dystrophy. For those of you who have or do follow muscular dystrophy research you can guess what the natural caveat was: “This treatment is only in Phase I trials and if successful will undergo Phase II….” and if that all works out it will be twenty years before anyone is actually treated with this new “successful” treatment.

I still do hate this about reading anything promising regarding muscular dystrophy treatment. If it can’t change my life right now, then I don’t want to hear about it until it can.

I am tired of hearing how muscular dystrophy has been cured in mice or dogs. I am tired of hearing about how long it’s going to take for a treatment to come to market. I am tired of hearing how some kids got injected in their big toe with some promising drug. Frankly I could live without my big toe. Tell me when you fix their legs!

So instead of going through this constant roller coaster of ups and downs when new treatment news is released (especially now with the internet), I simply don’t search for research updates anymore.

If I come across something, fine, but I take it with a grain of salt. I tend to give the research section in the MDA magazine nothing more than a hazy gaze. If something major happens I am pretty sure my doctor at the MDA clinic will be able to tell me about it.

I have been able to adjust my life to living with muscular dystrophy but a treatment would be great, don’t get me wrong. But don’t get my hopes up either unless you can follow through now.

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