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Familial Adenomatous Polyposis With Jenny From Oklahoma
Manage episode 480690332 series 3485028
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In this milestone 50th episode of Rare Connection, host Joanna sits down with Jenny, the powerful voice behind the blog Life’s A Polyp. Diagnosed with Familial Adenomatous Polyposis (FAP) as a child, Jenny underwent a total colectomy at age 9, followed by a series of life-threatening complications that led to multiple surgeries, an ileostomy, a reversal, and eventually the diagnosis of Short Bowel Syndrome (SBS) — one of the conditions covered in the proposed Medical Nutrition Equity Act (MNEA).
Jenny opens up about:
- Her early diagnosis with FAP and its impact on her childhood
- Coping with surgical trauma and living with medical PTSD
- Her ileostomy and pull-through procedures
- Life with Short Bowel Syndrome and daily nutritional challenges
- The importance of access to medical foods and legislative change through the MNEA
- Advocating through her blog and building community for others with rare GI conditions
- Finding diagnosis for a lesser-known condition: abdominal migraines
Jenny’s story is raw, insightful, and a powerful reminder of why visibility for invisible illnesses matters.
📌 Connect with Jenny:
🔗 Blog: Life’s A Polyp
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