Rare with Flair

118. “do you want us to spell our disease’s name for you?”

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hi hello hey, let’s go to the doctor!

It’s been a hot minute since we did an episode on chronic health, but we’re BACK and ready for action!

On this episode, we’re diving into what it really means to be your own advocate in the healthcare system, especially when you have a rare disease and a vision impairment.

From the constant parade of specialist appointments to the exhausting task of explaining your condition to every new doctor (yes, we’ll gladly spell it… again), we’re sharing our lived experiences navigating medical systems that often aren’t built with us in mind.

This episode pairs perfectly with a couple of others from our archive:

  • 117. few but many: hps conference 2025: our most recent ep, where we shared our reflections on meeting others with Hermansky-Pudlak Syndrome, connecting with researchers, and the joy of community
  • 68. the nih has my colon! the research episode: a behind-the-scenes look at what it’s like to be the research subject, from clinical trials to NIH visits (including what it’s like to keep a jug of pee cold for a day)
    • Cass at the NIH & Case participating in medical research, 2016/2023
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    Rare with FlairBy Casey Greer and Cassandra Mendez
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