Forums

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

Experience with normal pressure juvenile glaucoma?

I have low/normal pressure juvenile onset open angle glaucoma that was ~11 years late diagnosed. It’s medication resistant and my next option...

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...

Finding a specialist

I learned I not only have osteonecrosis in both my hips, but also my left knee. All due to high doses of...

Exercise and Chronic Fatique and Pain

I have been going to physical therapy force weeks now after loosing excessive weight. I had severe protein malnourishment and severe muscle...

Caring for a child with a rare disease

This forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story....

What is the most annoying unsolicited advice you've heard?

What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?...

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...

People do not understand that fatigue is different from exhaustion.

Undiagnosed still but something is wrong

Hi, I know there’s something going on, but doctors dismiss me, don’t listen, or tell me they don’t know what’s wrong but...

My Journey with Myasthenia Gravis and Lung Cancer

On an ordinary day, on a routine doctor appointment, I found out I had myasthenia gravis and lung cancer in one brief...

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