I'm Jenny and I was diagnosed with Familial Adenomatous Polyposis (FAP) at age 8. FAP is a hereditary rare disease that causes the development of hundreds to thousands of colon polyps. An individual with FAP is guaranteed to develop colon cancer at some point in their lifetime, which is why preventative treatment is crucial. However, cancer is able to develop anywhere in the GI tract as well as other parts of the body with FAP. Due to surgeries to remove my colon and part of my small intestine, I was diagnosed with another rare disease: Short Bowel Syndrome (SBS). I have also been told I am at risk for kidney disease and am at greater risk of cysts and tumors due to FAP.
My mother, grandfather, and countless great aunts and uncles also had FAP and GI cancers. My mother and I are the last survivors in our family with FAP and I hope to be the one to end FAP in my family.
At age 9, my polyps were starting to turn cancerous and removal of my colon with a temporary ileostomy was decided necessary. I experienced many complications and near death experiences the following year resulting in 4 more surgeries and I was left with an ileostomy for 6 years. After a routine scope and consultation with another surgeon, it was decided a straight pull-thru may be an option. At age 15, I had the straight pull-thru surgery and experienced life threatening complications from adhesions that resulted in another surgery for adhesions removal. My health slowly stabilized over the next 5 years. I was able to graduate with a Masters degree in Social Work, I have maintained full time employment in dialysis, and am enjoying life as well as discovering new challenges for myself everyday.
This is my journey with FAP and SBS: recounting memories and experiences, coping with life changes, tackling new challenges, and doing my best to continue to survive. When I was a child, I didn't know anyone else with FAP outside of my family. I hope you'll join me and together we can fight this disease.