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

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...
ANNABELLE. DESMOID TUMOR. DIAGNOSED AT 2. ILLINOIS.

ANNABELLE. DESMOID TUMOR. DIAGNOSED AT 2. ILLINOIS.

Hi, my name is Annabelle.  I am 4 and half years old and I have Aggressive Fibromatosis, also known as Desmoid Tumor, in my right forearm.  My mom tells me that I have had my tumor since I was born, but since I can’t remember back then I’ll have to take her word. ...
KIM. DESMOID TUMORS. DIAGNOSED AT 36. ILLINOIS.

KIM. DESMOID TUMORS. DIAGNOSED AT 36. ILLINOIS.

Little did I know my dad’s announcement would alter my life so much.  When I was five years old my father was diagnosed with Familial Adenomatous Polyposis (FAP). After being diagnosed with FAP, my dad had surgery for a colectomy.  They took biopsies from several...
RAQUEL. FAP/DESMOID TUMOR. DIAGNOSED AT 17. COLORADO.

RAQUEL. FAP/DESMOID TUMOR. 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...