We all live with an acceptable amount of pain since we have no choice.

What do you rate your every day pain?

If someone swapped bodies with you, what would THEY rate that pain?

  • SpezCanLigmaBalls@lemmy.worldM
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    1 year ago

    You got dealt a very heavy hand. I’m glad you’re still here kicking it with us. I can only imagine how hard that is. At least the cancer risk is pretty low but everything else sounds not fun at all.

    Since this is so rare have they done studies on you to learn more about it?

    • popemichael@lemmy.worldOP
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      1 year ago

      There’s a ‘community-driven nonprofit’ that all of us put together and run called The FD/MAS Alliance

      We all raise any money that we can and funnel it into genetic research to find a cure for this monstrously life altering condition.

      Being able to pool our money like that and apply for grants allows us to hire doctors and labs to look for a cure. Fingers crossed with CRiSPR!