DESMOID TUMORS

These are the portraits and stories of survivors of desmoid tumors, a rare form of sarcoma, sometimes also referred to as aggressive fibromatosis. Approximately 900 people are diagnosed with desmoid tumors every year. This means that out of a million people approximately 2 – 4 people are diagnosed with desmoid tumors each year.

Being such a rare disease, most 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 desmoid tumors 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...

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...

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...

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. ...