Jun 30 2022 55 mins
This episode features rare disease patient, behavioral health worker, and striving PhD recipient Emily Parks! Based out of Washington, D.C., Emily was diagnosed with myopathic intestinal pseudo-obstruction at a very young age. This rare genetic disorder affects the development of smooth muscle tissue in the intestines, which requires patients to rely on treatments such as PN, or even intestinal transplants. Emily received her intestinal transplant in December of 2020, and has been off of PN since. She founded POP! (stands for "Pissed Off Patients") as a way to create a supportive and educational platform for those who have or think they might have medical PTSD (post-traumatic stress disorder).
We discuss her transplant story, what it's like living with a rare disease in D.C. vs. Boston, ballroom dancing, and much more!
POP! website - https://popmedicalptsd.org
Follow POP! on Instagram - https://www.instagram.com/pop_medicalptsd/?hl=en
POP! Focus group on Facebook - https://www.facebook.com/groups/medicalptsdfocusgroup
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