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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...

Having a disease without a name

Greetings, I have what may be an autoinflammatory disorder vs an unlabeled rare condition that affects my barrier to inflammation. We found treatments that generally work and keep me off...

Unknown Health conditions that is so discormforting

Hi, everyone I woke up one morning to notice that I have a burning sensation on one of my legs. I thought it was a slight stuff. Over time some...

I wish others knew that...

What is one thing you wish more people knew about living with a rare disease?...

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...

Undiagnosed all season cold sensation of body

I'm 59 and I have a condition for over last 10 years that is now immensely impacting quality of my life. I feel cold getting absorbed throughout my body except...

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...

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