Hello Brad, and everyone, I am an 18 year old female, whose doctor
said that she is pretty sure I have Limb Girdle, type 2 (I guess). I
know she said Limb Girdle. This is a long letter, but I'm excited
about the Jain Foundation and wonder if I could be to use. The thing
is, I have been weak all my life. The doctors have always been unsure
about what I have, and they still are(she can't say for sure that I
have LGMD). When my mom was 8 months pregnant with me, she was
electrically shocked by holding onto the oven door and the
refrigerator, and there was wetness there or something, and it
shocked her; she couldn't get free, so she pulled the oven door off
it's hinges and it popped her arm out of its socket and then popped
it back it in. She heard popping in her stomach and didn't feel me
move after that. We have always felt that this is why I was weak, and
some doctors have agreed with us. Although this new one doesn't think
that is the case and after taking some different muscle biopsies, she
thinks it is LGMD, but can't definitely say for sure. I walked until
the age 12, and that was because I was growing and the doctors
thought that it would be safer(because I got knocked down easily) to
have me sit in a wheelchair during the day, well it got harder and
harder to walk the more I sat. Anyway, sitting in the wheelchair my
back curved because of the weak muscles, and my feet contracted. So I
got my tendons cut, and now my feet are flat. I got a 15 level spinal
fusion surgery and now my back is straight(for the most part). So
anyway, I REALLY FEEL that I could walk again. I sent in for a
deferral from college till fall 2008. So I am working on walking
again. But anyway, I swear I am building my leg muscles, and I just
am trying to stand, but it is hard. My case is really weird, and all
my life doctors haven't known for sure what I have. I was wondering
if the Jain Foundation could use me? I registered and all, and got an
email, but that is it. It's frustrating, because if I work hard I can
see my muscles grow and feel a tad bit stronger, but I never stick to
it, and they go away as quick as they come. I am healthy, and it's
again frustrating because it's like my muscles could work but the
protein, or whatever just needs to be able to build, and LAST longer.
I just wanted to share my story with you guys, and I hope and pray
there are breakthroughs in research. I also wonder if I could ever be
involved in research, and in testing things out on me. –Lindsey