Weekly Warrior: Meet Jenny

“I’m Jenny & I have the rare genetic disease Familial Adenomatous Polyposis. FAP causes 100s to 1,000s of precancerous colon polyps to develop at a young age and these polyps may develop anywhere in the GI tract. There are several extra-colonic manifestations that may occur including elevated risk for other cancers. I had my 1st surgery to remove my colon at age 9 with an ileostomy. I experienced life threatening complications resulting in 4 more surgeries within the span of a year. Due to these complications, a part of my small intestine was also removed resulting in the development of a 2nd rare disease, Short Bowel Syndrome.

6 years later, I had my ostomy reversed into a Straight Pull Thru. Unfortunately, I experienced life

threatening complications again following my reversal resulting in a 7 th surgery.

It would take 6 years after this surgery for my body to begin to stabilize. This would change once again in

2015 when I was unexpectedly hospitalized. During this hospitalization, I began to experience severe,

chronic abdominal pain and nausea that worsened when eating which has improved since my recent 8th

surgery. Since then, I have chronic, debilitating nerve pain of unknown origin. I continue to seek

consultations from various specialists for a diagnosis.

It was very lonely growing up with 2 rare diseases & not knowing anyone outside of my mother &

grandfather with them. I’m fortunate to connect with countless individuals not only with my rare

diseases but also similar situations through various organizations including my blog, Life’s a Polyp, as

well as Rare Patient Voice.

My medical experiences have led me to dedicate my life to the rare disease & chronic illness

communities: Seeking to empower others, raise awareness & research funds for FAP. Rare Patient Voice

shares this passion by providing necessary opportunities to patients so that we may have our voices

heard about our own health experiences & provide valuable feedback through studies.”

If you are interested in being featured as a Weekly Warrior, please contact Stacey Haines at Stacey.Haines@rarepatientvoice.com.

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