This week's interview is with an amazing, funny, and fascinating woman named Jen Roman! Jen is a rare disease patient whose life as an EMT was turned upside down, and since then, she has become well acquainted with spinal taps, brain surgeries, and unknown problems. Jen was diagnosed with Idiopathic Intracranial Hypertension, or IIH, which is a rare disease caused by an overproduction of cerebrospinal fluid. However, Jen's life is still full of unknowns because she has yet to pinpoint what caused her IIH. She and I talk about struggles of rare disease life, how a scientific occupation can change your perspective on diagnosis, and more!
Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts!
Follow Jen Roman on Instagram - @kylo_jen_94
Jen's spotlight blog post on Our Odyssey - https://ourodyssey.org/our-odyssey-spotlight/jentruth
Follow me on Instagram - @risforrarepodcast
Questions? Email me at risforrarepodcast@gmail.com
