Wait, How Do You Spell That? A Rare Disease Podcast

You're not failing at self-care: staying okay-ish in a pandemic

Patient Worthy writer and staff artist, Sunni, joins Ilana to talk about the only thing any of us can talk about: COVID-19. We're not here to scare you. We talk about what we're doing to cope, weird pressures surrounding self-care, and how the rare disease community is especially affected. Here's the article about being blind during the pandemic that we talked about: https://www.bbc.com/news/disability-52118942. Here's a link to the episode of The Daily that brought Ilana a little solace: https://www.nytimes.com/2020/03/13/podcasts/the-daily/coronavirus-relief.html.

Not just carriers ft. Taylor Kane from Remember the Girls

Rebekah and Ilana talk with Taylor Kane, who founded Remember the Girls, a nonprofit supporting carriers of X-linked diseases when she was 17. Taylor speaks about her experience with rare advocacy after losing her father to Adrenoleukodystrophy, misconceptions surrounding the word "carriers," and the projects Remember the Girls is working on now (Reproductive toolkits! Provider recommendations!) You can learn more about her work at https://www.rememberthegirls.org/, @rememberthegirls. You can also find Taylor's book, Rare Like Us, here: https://www.amazon.com/Rare-Like-Us-Finding-Plagued-ebook/dp/B07VYL7B49

PKU is NOT like that time I was vegan!

Ilana and Rebekah talk about PKU and the time that Ilana participated in the NSPKU's Diet for a Day Challenge. Ilana learns that her experience as a former vegan did not prepare her for this, and why this matters. They also learn how to pronounce phenylketonuria and phenylalanine and honestly, make fools of themselves. Forgive them.

Adulthood is hard! Ft. Anna from Our Odyssey (Live Recording)

Heads up- this was recorded on site at the NIH and the sound quality isn't great. We're sorry! We're learning! Rebekah and Ilana sit down with Anna Laurent from Our Odyssey, a new nonprofit that provides support to young adults living with rare and chronic illnesses. We talk about Alagille syndrome (ALGS), the perils of young adulthood (especially when managing a rare disease), and the importance of being able to talk with people who get it. You can learn more about Our Odyssey at https://ourodyssey.org/ and on social media @_OurOdyssey_.

Share your story! But only if you want to.

Patient Worthy team members Rebekah and Ilana discuss the role of story sharing in the rare disease community. Talking about your experience can be powerful and help forge connections-- but it's also nuanced, deeply personal, and honestly nobody's business if you don't want to share it. Rebekah reads a quote from Rita Charon's book "Narrative Medicine," and also wants to note that, despite what you'll hear on this episode, Charon is actually pronounced more like "Sharon."