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

Feeling alone

I have Microscopic polyangiitis, a form of vasculitis that closes up my small blood vessels. Mostly in my kidneys, lungs and intestines...

15 years no closer to answer's

Hi everyone, I'm just winging it and reaching out to the Internet today to ask if anyone knows anyone or any conditions...

That I can control my symptoms if I make an effort

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

Trying to make complex care feel less overwhelming

Trying to make complex care feel less overwhelmingI keep thinking about something I’ve seen over and over in complex care: the care...

How Do You Cope?

Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage...

Invisible Illness

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

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 anyone found effective joint pain therapy that actually works long-term?

Hi everyone, I’ve been dealing with joint pain for quite a while now, mostly in my knees and occasionally in my shoulders...

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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