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.

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, [email protected], and thanks for your continued engagement and positive words!