Forums

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

How Do You Manage Weight Changes When Living With a Chronic Health Condition?

Weight management can be difficult when you’re also dealing with a chronic health condition. Things like medication, activity levels, sleep, stress, appetite...

Dealing w more than one

Hi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two...

Congenital short pedicles on MRI after a 2019 injury — anyone else dealing with this?

Back in 2019, I had an accident at work where I was sideswiped by two pregnant sows. When I got my MRI...

How to Be a Great Friend to Someone Living With a Rare Disease

What characteristics, behaviors, and kindnesses mean the most to you from people who are not living with a rare disease?...

Working with disease

I’m starting a new job today. It’s a remote, part-time position that pays well, but it doesn’t offer any benefits. I have...

What's wrong with my hand?

Too many needle pricks while my time in the hospital, now my hands look so different. Does anyone else face the same...

Living With Adult-onset Still's Disease?

Has anyone been diagnosed with adult-onset Still's disease? What was your diagnosis experience like? How do you manage life with AOSD?...

How do you find a doctor who will actually look at your whole medical history?

One of the things I keep hearing from people living with complex or rare conditions is how difficult it can be to...

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...

Medical mystery (6+ years)

I am at a loss. This has been an ongoing and progressively worsening problem for approximately six years, and it has affected...

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