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Anyone have this? It’s really distressing.

I’m wondering if anyone else has experienced something similar, especially at night or around sleep. I’ve been having episodes involving a strong...

Possible Cervical Myelopathy

7 months ago I suffered an acute injury causing a herniation at L5-S1 giving me S1 Nerve compression. The neurologists and orthopedics...

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...

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