Anyone here with rare diseases?

Viewing 5 posts - 1 through 5 (of 5 total)
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  • #1703


    HI! I just joined, and have many illnesses. one of which is called M.E. That stands for Myalgic Enecpalomyleitis. Its in the same family as Polio and MS, with a few more symptoms and such. Id like to connect with people who have rare illnesses to discover new ways of coping with a sickness even most Drs are unaware of!



    I have mitochondria disorder when I was a kid it was really bad when I played with friends I was sleeping the next day for the whole day! that’s how bad it got and the stupid thing is Its not conformed I show all signs but nothing lol



    Hi Y’all! I have a rare disease called COP (no D!) – Cryptogenic Organizing Pneumonia. I also have diabetes, Cusing’s Syndrome, Sjogren’s Syndrome, arthritis in my back, hands and elbows. I have a slew more but I was supposed to die, according to doctors at Presbyterian Hospital in New York, it will be 9 years this May (2016). I don’t go by expiration dates like the milk in my fridge.

    The arthritis in the hands and back are from having to carry oxygen with me whenever I go out. Mainly doc appts. but I’m also addicted to the beach.

    Coping is something you do each day. Is it a good day? Is it a bad day? If I get up, will moving around make it better? Will it make it worse?

    Those who face diseases that can rear their ugly head, or make every day a struggle, will find friends and family will not be able to understand, no matter how educated they are. You find out quickly who your real friends are (including family members). How many times have I had to call off a dinner, lunch, get together because I was physically or mentally unable to? Did those involved understand, over and over? Those are the ones to hold onto.

    I thank God I found this site and I hope everyone can connect and find at least one friend who understands your struggles.

    Blessings to all!



    Hi to everyone. Yes I have a disease that nobody ever heard of. I have CRPS/RSD ever heard of it didn’t think so.
    ok it’s Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy. which is a nerve disease, it can effect any limb that was injured like you need surgery ( thats how I got it)
    It can spread, some have on one side,some have it whole body, I’m one of the lucky one
    I only have it in foot/ankle, it has spread up my leg now to about my knee.
    I had a tear in my tendon my right foot. after my surgery my foot got worse. That when I was diagnosed with CRPS-2 so I have permanent nerve damage right foot can’t drive anymore, Most Dr. ‘s don’t even know what it is. My injury was due to abusive relationship
    July 3 2012 started my down fall to my health.



    Hey everyone! Just wanted to say hi, I’m new. I have a rare heart condition called Tricuspid Atresia. My Tricuspid valve is severely underdeveloped and as a result, I have a few other health problems. Anyway, nice to meet you all.

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