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Dori_max

543d

wouldn't it be fun if there actually was a rare disease club i guess that goes against the rare part… but it would be nice to meet folks broken in the same way as me

Top reply
    • Trainwreck

      326d

      I friend of mine’s son has Charcot-Marie-Tooth Disease. He’s been to a few specialists that have some knowledge of this rare disease but not giving him much hope as he is in his mid twenties and will eventually be in a wheel chair. He has so much issues with his hands! So young with such a disease! I pray for some resolve of this rare condition!!!

    • Trainwreck

      326d

      I friend of mine’s son has Charcot-Marie-Tooth Disease. He’s been to a few specialists that have some knowledge of this rare disease but not giving him much hope as he is in his mid twenties and will eventually be in a wheel chair. He has so much issues with his hands! So young with such a disease! I pray for some resolve of this rare condition!!!

    • Harvey78

      328d

      You mean like a monthly loot box where you get books gadgets and food to help you cope? I think that would help break up the despair and monotony of Dr appointments.

    • Ash.G

      328d

      I think that there should be. I have NVLD and that is considered rare I think.

    • squibibi

      542d

      rare disease club but everyone has something different lol but yeah I get it, it would be nice to find and speak to someone who has the same condition as me

    • JustRachelle

      543d

      What rare disease do you have?

      • Dori_max

        543d

        @JustRachelle hereditary neuropathy with liability to pressure palsies (HNPP)

        • JustRachelle

          543d

          @Dori_max I had to look it up to see what it was. I’m so sorry you’re going through that. ❤️

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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