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

CMT type 4c1, hEDS, PsA, Fibro, Ichthyosis

I wish Drs wouldn't laugh off multiple diseases. Even a dna test didn't help. " only thier clinical opinion matters, not a dna test. I paid for my own dna...

MSL2 syndrome

Hi everyone, at first sorry for my english I didn't write for a long time and I live now in Germany. Our 7 years old son has after cca 5...

I wish others knew that...

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

I’ve had eye muscle weakness and droopy eyelids from Myasthenia Gravis , Has anyone else experienced vision problems due to a rare disease?

I’ve experienced vision issues linked to a rare condition — specifically eye muscle weakness and droopy eyelids, which were early signs of Myasthenia Gravis in my case. It started with...

Where do you find support?

Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey, has the type of support you need changed...

10 Year old with medical mystery

Good Day Everyone My son has been sick for about 4 months. He is seeing doctors and was in the hospital more than once and still he is not beter...

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...

A Nauseating combo of disorders from birth only to worsen 14 years later

So Being born with the combination of ADHD, Autism and Tourette syndrome was bad enough only to have injury after injury then a tonsil removal surgery at 5 years old...

Awake but trapped

I’m awake, fully aware that I cannot move. No idea how long it will last? Will I stop breathing? Nobody home for the dog to alert, so I lay here,letting...

Feeling pure psychological discomfort after being on medication

Hi everyone! I am currently on Effexor, Seroquel and Risperidal. I have been on Effexor since Janauary 2024, Risperidal since March 2024, and Seroquel since November 2024. I have been...

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