Forums

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

From Parkinson’s to Progressive Supranuclear Palsy

10/2020 diagnosed with one disease, 12/2023 P.S.P. I was told that this new disease diagnosis was so much worse. My fate was...

How do you convince a dr. to even LOOK under the hood. Not just at the chassis. I FELT demeaned!!

Unexplained 2 week fever multiple times

Started in 2022 and just finishing the 5th time. I live in upstate NY 6 months and west central Florida the other...

Happy New Year ❤️

Id like discuss topics about rare combination Cardiac Amyloidos and Multiple Myeloma...

Traveling With a Rare Disease

Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to...

How to deal with extremely tough days?

Dietary Changes

Hi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an...

Sweet Syndrome

As I mentioned in my previous post, it took nearly 9 years to be diagnosed with Sweet Syndrome. I spent the first...

Does any have a rarer type of EDS?

I was just diagnosed with EDS and Dysautonomia. I'm still unsure which types, though and I'd like to know people's experiences....

Getting doctors to understand

I spent 10 years of my life in excruciating pain. The last two years of my life I considered not being here...

Categories

Select a category to find topics that interest you.