Forums

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

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...

How to find a doctor that cares and is willing to dig deeper

Hi RD friends! My daughter has some type of sero-negative auto-immune condition, and has had it since she was 12 (she's 32...

Help Cure compass

I have a daughter with nf1 and didnt get info or updates on treatments so i developed a web site to get...

cerebellar ataxia

Dealing with the many symptoms of ataxia. Has anyone else dealt with this?...

Categories

Select a category to find topics that interest you.