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

Recently been diagnosed

With dermatomyositis, unfortunately I've been suffering now from it for almost 4 years. I have athrophy my thinking space isn't what it was and the biggest challenge has been getting...

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...

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Biggest challenges you face in your current journey?

Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a...

How to get diagnosed?

Hello. I have a rare disease no one has heard of. I've tried to get into a rare disease clinic but they require a diagnosis. How do you get a...

Invisible Illness

What aspects of your rare disease are invisible to others?...

Romantic Partnerships

Has your rare disease impacted your romantic relationships? What challenges or successes have you encountered?...

Do you allow your child with a rare disease to go on overnight school field trips?

If so, what tips have worked for you and your child? How did you prepare your child and yourself for this experience? Please share your insights or personal anecdotes below....

Colonoscopy to rule out Mast Cell Activation Syndrome...

What exactly are they trying to find out from the results of Colonoscopy?...

My symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking.

Long time to diagnosis

I had symptoms with Bechets when I was 10 yrs old hospitalized with terrible mouth sores and pain. From abused home. No support never Complained again . Continuing symptoms terrible...

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