I was asked to start an annual event for FAP, Desmoid Tumor and Colorectal Cancer survivors, The First Annual Utah Survivor Celebraton! We held it August 10.
These three diseases are closely related and survivors can have one, two or all three of these nasty cancers. People with FAP and/or Desmoids are so rare that they have no peers to look to for support. I have been fighting Desmoids for 18 years and never met or talked to anyone with Desmoids until this past year.
Desmoids is a non-metastasizing soft tissue sarcoma cancer. FAP is a genetic disorder that can create thousands of polyps, which turn into colorectal cancer. Many people with FAP also have Desmoids. There is not much research done and there are no proven treatments. The pharmaceutical companies don’t make any money off of rare diseases so they are not interested in funding drug research or in doing clinical trials. We are on our own.
If you would like to donate goods, services or of course we like money, please contact DeAnn Sorensen at 801-644-7337.