Forums

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

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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....

Active 5 days ago

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?...

Active 6 days ago

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...

Active 6 days ago

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...

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...

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What is your go-to item or ritual for finding physical comfort during a flare-up or a hard health day?

Whether it’s a specific pillow, a favorite tea, a warm bath, or a cozy blanket, we want to know what brings you...

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...

I wish others knew that...

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

High red cells and tired constantly.

I have morphea and a spinal malformation, constantly sore points underneath each morphea patch, muscle spasms, tiredness and watery vision. I have...

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