EPISODE 043: Living with Rarely Uncommon Disease - Neuroendocrine Tumor (NET) Spotlight
Listen
In this episode, we discuss how their idea of being human has evolved, the difficulties of having multiple rare diseases, and how Josh getting an injury changed he and Tiffanny’s relationship dynamic. Tiffanny explains what it means to have rare diseases managed and what her journey has been like with neuroendocrine tumors (NETs). The couple also very personally open up publicly, for the first time, about the prospect of having children.
You get insight into adaptability, flexibility with evolving plans, how to take incremental progress as wins, and how advocacy work contributes to your own healing.
What’s more, rare disease may not be the exception the rule, and our healthcare system needs support to evolve into more effectively treating a wider array of disease.
About the Thomasons
Josh and Tiffanny Thomason of Portsmouth, Virginia are returning guests from episodes 7 and 8 of season 1. They are married, navigating their relationship, and also navigating Tiffanny’s journey with rare disease and the co-existing conditions and impacts that come with that. Last season, we discussed Cushing’s disease, diagnoses, treatments, and more.
The “Music to Ignite NET Research” benefit concert
The On Being Human Podcast supports neuroendocrine tumor research, also known as NET research, and many others did too. On Wednesday, April 29th at 7 pm EDT/6 pm CDT, Tiffanny and Josh Thomason hosted “Music to Ignite NET Research,” a virtual concert featuring Jocelyn Oldham, a musician from Richmond, VA, and On Being Human’s very own Ryan Sauls and our son, Will Sauls.
This event supported research funded by the Neuroendocrine Tumor Research Foundation (NETRF) and honored the recently retired Aaron Vinik, MD, PhD - a prominent endocrinologist who cared for NET patients for nearly four decades at the Eastern Virginia Medical Center in Norfolk, VA.
People who donated to the cause received a personal invitation to attend the event life, over Zoom. All event proceeds were matched by the Spark Hope campaign, doubling the impact in NET research.
To see more, visit the fundraiser page for Music to Ignite NET Research.
