6. on illness, life, & death

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hi hello hey, we hope you’re having a lovely day!

this week, we wanted to get real with you guys. A lot of what we talk about on this podcast is related to blindness which is great and something we’re passionate about. Having studied legislature, using mobility aids, and even reading are things that affect us in nearly every way. However, there’s a whole lot more to the conversation about our rare disease than just our eyes, and we wouldn’t be “Rare” with Flair if we left out part of the conversation. Also, if you’re new here, this is a great time to stop and go listen to our intro episode where we explain what our rare disease, Hermansky-Pudlak Syndrome, entails, so please give it a listen since we’re jumping right in this time around.

Like all the content we make, we stay true to ourselves and find ways to make heavy topics light, but this episode might be heavier than the rest of our content. We wanted to take the time to talk about our experiences with chronic and mental illness, and also explain how having HPS frames our worldview. This whole episode is extremely important to us, and we hope you can enjoy it while also getting a more raw look into our lives.

episode summary

We start out by making some small talk and Cass mentioning one of her favorite celebrities who’s also a chronic illness warrior. We transition to talking through our timeline having HPS, starting with birth and childhood. One of us was diagnosed at birth and the other wasn’t, so you’ll see how that knowledge shaped our earlier years. Getting into our teens, Case mentions some of her chronic issues, and Cassandra tells her story about getting diagnosed with Crohn’s disease and how it ravaged her body. Then we talk about the importance of community and touch on mental illness. After, we talk about how HPS and the associated pulmonary fibrosis shifts our worldview: Cass, as someone who will have PF, and Case as someone who won’t but many in our community will. At the end, we play one of our little rapid fire games with funny hospital moments.

as always, please send any questions or comments to our email, hello@rarewithflair.com, and thanks for your continued engagement and positive words!

show notes

• Neat timeline coincidences about releasing this episode in early October
  • Casey was diagnosed with HPS TEN years ago!
  • The HPS friend Casey mentions passed away two years ago
  • Casey’s lovely puppy Rupert turns two on October 7!
• Cassandra plugs Selena Gomez’ new makeup line Rare Beauty! We love a rare queen who shows her transplant scar (CNN)

our diagnosis and chronic illness stories

• Case references our first episode where we described what Hermansky-Pudlak Syndrome is, so if you’re new here, give it a listen!
• Cass mentions the gene pool effect (NIH Human Genome Research Institute) for Puerto Rico, causing a denser concentration of people with HPS
  • Here’s a specific journal article on HPS in Puerto Rico (Journal of the American Academy of Dermatology)
• Cass shares her story with Crohn’s disease:
  • She defines IBD, but here’s a definition of IBD from the Crohn’s and Colitis Foundation
  • Cass references a post from her personal WordPress blog on the events of 2015
  • She mentions a “little blob” on her abdomen after surgery; she’s talking about an ileostomy stoma (where the bag goes) (United Ostomy Association of America)
• Casey tells her HPS diagnosis story, making reference to an episode of the show “Mystery Diagnosis” on HPS (YouTube). We both know the woman in the show and she’s since had a successful double lung transplant earlier this year!

pulmonary fibrosis, life, death, and perspective

• Cassandra talks about accepting her reality knowing she’ll likely have pulmonary fibrosis in the future. Accepting death is really important, so here’s a video from the late and great Claire Wineland on death (YouTube)
• Case and Cass record these while on Facetime and we lost connection hence the singing lol
• Casey talks about having survivor’s guilt (Psychology Today) and how it affects the “non-lung” subtypes in our community
• Casey mentions the Hermanksy-Pudlak Syndrome Network and how we raise money to fund research for a cure for lung disease. If you’re so inclined, please donate to our cause!
• Cass mentions exciting research on HPS like stem cells, so here’s current (2020) news on how coronavirus lung disease might help treat us! (Boston Herald)