FSH Muscular Dystrophy

Discussion in 'The Watercooler' started by witzend, Apr 10, 2013.

  1. witzend

    witzend Well-Known Member

    I'm going on 10 years with the CD board now, and you may have noticed in my Sig line that L, M, and I have FSH Muscular Dystrophy. My friend Amy Bekier also has FSHD and did an interview with her local cable station a while back to explain what it's like to have and/or to live someone who has FSHD. She speaks so eloquently and matter of factly about the topic, and I wanted to share with you if you are interested in learning more about the disease. It's not a short video, but you'll get a lot from it even if you don't sit all the way through.

  2. cubsgirl

    cubsgirl Well-Known Member

    I watched about half of the video and I learned a lot. The challenges that you live with .....wow!
  3. witzend

    witzend Well-Known Member

    Thanks for watching, CG. Two things struck close to home when I watched. I think that more and more so as I get older with the disease progressing gradually it's been difficult to watch myself lose functions. You don't know it's gone, but you know someday it will be. It's always a grieving period when you realize something like "Today I can't pick anything up off the floor with both hands, and I'll never be able to do that again." But, like Amy says, then you adapt and you get on with it. I also have what they call "the mask" face. No expressions, per se. It's very confusing to people, and has cost me more than one job in my life. It's also was a big reason that L's dad was able to make me out to be such a loser/monster. No matter what he said in court or in front of others, to others I couldn't seem to "laugh it off" like other people, and a snappy retort comes back as snark. I just plain gave up on those people.

    Amy has a more open mouth weakness in her face, which appears to be smiling, but it can really be awful looking in some folks. They can just never close their mouths and it's awful on their teeth. There is a cosmetic surgery that can tighten the lower lip and help when it's really bad, but insurance will fight paying for it. It's a shame because the folks who need it literally have their lower lip hanging to their chin 24/7. They're social outcasts as children because they can't eat with their mouths closed. But in lots of ways we look just like everyone else, so to outsiders our look/abilities just don't add up.

    Luckily, as Amy says, we have developed a mouse with FSHD which we have been able to reverse symptoms on. It's not a cure, and it's a long way from mouse trials to human treatment, but it's WAY further than we were when I found my first FSH support group 20 years ago. Maybe my kids will have a chance to recover, after all. I can hope!
  4. recoveringenabler

    recoveringenabler Well-Known Member Staff Member

    I watched about 1/2 as well, (at work now) interesting interview, Amy is very articulate. You've dealt with a lot in your life Witz, you have a good attitude too. Thanks for sharing................hugs.............