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Nicole Behrens' Fundraiser:

Desmoid Tumors - We need a voice

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Nicole Behrens

THE STORY:

Desmoid Tumors or also known as Aggressive Fibromatosis is an extremely rare form of soft tissue cancer. This monster creates a tumor that represents scar tissue and then aggressively grows eating everything in its path - tissue; muscle; bone. It can attack anywhere on the body, although, It typically strikes the intra-abdominal area where the tissue that connects the intestines to the rest of the body via major blood vessels cutting off circulation and intertwining with major organs making surgery and removal of the tumor impossible. When surgery is an option the re-occurrence rate of the tumor is almost guaranteed. The medical community's information is archaic and incorrect due to the few amounts of people afflicted with Desmoids we are labeled as "cancer but not cancer" there for we do not receive the assistance or treatments we require and our insurance will not cover multiple repeated MRIs. We are often left disfigured, not able to have children and amputated limbs. Desmoids attack any race, sex or age. Desmoids are INCURABLE as of right now. Please help raise awareness and fund the DTRF to find not only a cure but a quality of life.

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