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Read conversations, start a discussion, and connect with others about rare diseases.

diagnosis

what are some tips with managing fap syndrome...

1 year later, no diagnosis

Mom looking for support...It's been a little over a year since all this started. 2 hospital stays each 1 week long. First both hospitals showed results positive for scleroderma, (and...

The Weight of Rare Disease

This giveaway has closed but we still welcome community members to share their perspectives. Living with a rare disease comes with challenges that many people may not fully understand. Beyond...

New here today, and looking for folks dealing with MDS.

Been on different prostate cancer sites with interesting info, but can't find much on myelodysplastic syndromes (MDS) anywhere. Know there is only 10-14K cases a year. Doesn't seem like there...

Leg movement

2 years ago I started to develop a disorder in both my legs. Can't move properly. I'm 55 Can't run at all, trip up stairs n more things than I...

undiagnosed disease

I don't know what's going on but I'm dying...

I CAN'T OPEN MY FINGERS when my wrist is curled up!!! (docs pls help I wanna play guitar pls)

(my right hand) When I fully extend my wrist, making it bend as far backward as I can, I lose the ability to open my fingers; it feels as though...

Please help my wife, she has a disease that is difficult to diagnose

Symptoms include crooked tongue, difficulty swallowing, bloody sputum, and headaches from the back of the head to the top of the head and eye sockets. The pain lasts for about...

This is not my child that has a Rare illness, It is me.

How to deal with extremely tough days?

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