Using a Lifetime of Rare Disease to Change the Future

The story of Jenny

I’m Jenny and I’m a Rare Disease Advocate for Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS).

I was diagnosed with FAP at age 8 and required my first surgery to remove my colon at age 9. Following life threatening complications, I was soon diagnosed with SBS and underwent 4 more surgeries that year and developed medical PTSD as a result. After living with an ileostomy for 6 years, I was able to have my ostomy reversed into a Straight Pull Thru but again suffered life threatening complications requiring another surgery the following year. My 8th surgery was in 2021 and exacerbated my (at the time) undiagnosed Abdominal Migraine, requiring over a year of continued advocacy and effort to regain my quality of life. Within the following year, I was also diagnosed with Fibromyalgia and Esophageal Dysmotility.

Due to my medical experiences, I established Life’s a Polyp in 2012 with the focus of raising awareness about my rare diseases, building online communities for FAP, promoting utilization of mental health resources, and patient empowerment across various platforms. My ultimate goal in life is to help others avoid the same medical and mental health experiences I did as a child with rare diseases and to empower others in the navigation of their own chronic illnesses.
I started the National Organization for Rare Disorders FAP Research Fund in 2015, to which I donate profits from Life’s a Polyp Shop and my FAP Children’s Book – Life’s a Polyp with Zeke and Katie.