Periagoge
Scenario

How late rare disease diagnoses complicate the relief of answers

I finally got diagnosed with a rare autoimmune condition after ten years of being told my symptoms were stress and I'm angrier about the lost time than relieved about the answer.

More people experience this than they realize.

What we've seen

The validation of finally being believed is overshadowed by grief for the years spent doubting one's own reality and receiving inappropriate treatment.

Your guide for this
Dipa
Dipa works with people navigating exactly this kind of situation.
Ideas that help explain it
Worth thinking about

“Where Are You with Rare and orphan conditions?”

Peri

Peri can explain why this happens, help you decide if this is the right situation for you, and point toward the right journey or coach.

If this sounds familiar, the Library can help you find the bigger picture.