FAMILIAL ADENOMATOUS POLYPOSIS (FAP)

These are the portraits and stories of survivors of familial adenomatous polyposis (FAP),  a hereditary condition that in 100% of cases will turn to colon cancer if not detected and treated in time. I hope that sharing the stories of these survivors will help others to better understand the experience of living with FAP and give encouragement and hope to other survivors.

As with most other rare genetic diseases, the majority of patients never meet another person with the disease and sharing stories publicly and having an online community is essential to survivorship. We hope that sharing the stories of these survivors will help others to better understand the experience of living with FAP and give encouragement and hope to other survivors.

DAKOTA. FAP/DESMOID TUMOR. DIAGNOSED AT 22. PHILADELPHIA.

I played by the rules. I got good grades, graduated from an elite college, lined up a fantastic job, never drank more than a few sips of alcohol until I was legal, stayed away from drugs (including coffee’s caffeine), and volunteered in my communities. I ardently...

HEIDI. FAP. DIAGNOSED AT 13. NEW YORK.

Hi my name is Heidi and I have Familial Adenamatous Polyposis (F.A.P.). At thirteen years old I had genetic testing done to see if I tested positive for the F.A.P. gene. The reason why I was tested and especially at 13 was that my mom was diagnosed with F.A.P. at 19...

CAMERON. FAP. DIAGNOSED AT 10. MAINE.

My journey with F.A.P. begin in the winter of 2007. I knew well before then that there was a possibility I could have it. My dad was diagnosed 20 years prior and after genetic testing it was confirmed that I had this awful disease.  From that day forward my life...

GERARD. FAP. DIAGNOSED AT 21. MAINE.

My FAP journey began in the summer of 1992. That summer was supposed to be a special time for me, I was about to marry the woman of my dreams. Instead it turned out to be the start of nightmare.  After going to the doctors for the second time because of hemorrhaging I...

AMY. STAGE 1 COLON CANCER/FAP. DIAGNOSED AT 23. MARYLAND.

“I doubt it is polyps, because of your age.”  This is what the general surgeon told me when I went in for a consultation for rectal bleeding at 22.  I’d had symptoms for some time; at 16, the doctor suggested it was Irritable Bowel Syndrome and prescribed me some...

ASHLEE. FAP. DIAGNOSED AT 6. MARYLAND.

My name is Tiffany, and I'm sitting here next to my Ashlee. She is 7 years old and has Familial Adenomatous Polyposis (FAP)/Gardner’s Syndrome. We decided we would tell her story. Which, really is our story. Ashlee had a perfectly normal childhood up until age 5. In...

MEGHAN. STAGE 3 COLON CANCER/FAP. DIAGNOSED AT 26. MARYLAND.

December of 2011 started off as quite a whirlwind. Shortly after sending my husband Matt off to his deployment in Afghanistan, I had returned home to Pennsylvania, to live with my parents and plan our June wedding celebration. I say “celebration” because, thank God,...

ALYSSA. FAP. DIAGNOSED AT 14. WASHINGTON.

I was diagnosed with FAP syndrome in 2005. Up until recently, I held on to this belief that it was a part of my identity. I blogged about it for a couple of years, I wrote a memoir, and most people who know me know that I have it. I thought that it was part of who I...

RAQUEL. FAP/DESMOID TUMORS. DIAGNOSED AT 17. COLORADO.

My name is Raquel. I'm 43 years old and was diagnosed with FAP in 1987.  I have taken a great deal of time to compose my story, because with in my family having FAP has been treated like a secret. As a child I felt there was something going on with some of my family...

JON. STAGE 3C COLON CANCER/FAP. DIAGNOSED AT 36. CALIFORNIA.

It all started in my late 20’s.  I began to notice blood in my stool.  After a while I started mentioning it to Laura, my girlfriend at the time, wife now.  She would tell me to get to the doctor and check it out.  I would just put it off.  I didn’t like doctors and...

MARK. STAGE 4 COLON CANCER/FAP. DIAGNOSED AT 38. COLORADO.

My first personal experience with cancer began in the mid-1970s. My father, after mis-diagnosis for a bleeding ulcer, was diagnosed with colon cancer. After several touch-and-go surgeries and treatments, he survived his ordeals. It was during this time that we found...