Discussions By Condition: Rare Disases

muscular dystrophy

Posted In: Rare Disases 3 Replies
  • Posted By: Anonymous
  • July 14, 2006
  • 09:55 AM

I'm 25 years old, a Filipina. I think I have Emery-Dreifuss muscular dystrophy. I want to believe that I'll be able to live a normal life in a few years time. Yet there are still times that I can't help getting depressed.

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3 Replies:

  • i was diagnosed with limb girdle muscular distropy type 2 A...like yourself i hope to be ok for the next few years but i know that wont be so. i know it will get worse becuase i feel it. the only advice i can give you is try to live your life as much as you can. keep doing the things you have always done becuase at 1 point you wont be able to. do everything you can right now like there is no tomorrow :) you are lucky to be even where you are right now..many arent where you are becuase they're is a worse position then you & i.
    Anonymous 42789 Replies
    • September 28, 2006
    • 11:58 PM
    • 0
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  • I'm 25 years old, a Filipina. I think I have Emery-Dreifuss muscular dystrophy. I want to believe that I'll be able to live a normal life in a few years time. Yet there are still times that I can't help getting depressed.Leya, I have Emery-Dreifuss muscular dystrophy. I am 25 years old from Iowa. I would LOVE to chat with you sometime! Compare notes, share experiences and help each other understand this rare disease better. Where are you located? I have seen numerous doctors in the US and would love to help answer any questions you probably have or at least point you in some directions that may help alleviate any of your concerns and further help answer questions. I have a ton of research and could even email it to you!Have you been diagnosed? Do you still have speculation that you have it? I hope this email finds you well and I hear back from you! :)Cheers!!-Betsy
    BetsyBoop 3 Replies Flag this Response
  • I'm 25 years old, a Filipina. I think I have Emery-Dreifuss muscular dystrophy. I want to believe that I'll be able to live a normal life in a few years time. Yet there are still times that I can't help getting depressed.Leya, I have Emery-Dreifuss muscular dystrophy. I am 25 years old from Iowa. I would LOVE to chat with you sometime! Compare notes, share experiences and help each other understand this rare disease better. Where are you located? I have seen numerous doctors in the US and would love to help answer any questions you probably have or at least point you in some directions that may help alleviate any of your concerns and further help answer questions. I have a ton of research and could even email it to you!Have you been diagnosed? Do you still have speculation that you have it? I hope this email finds you well and I hear back from you! :)Cheers!!-Betsy
    BetsyBoop 3 Replies Flag this Response
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