Desmoid tumors are tumors that arise from cells called fibroblasts. Fibroblasts are found throughout our body and their main function is to provide structural support and protection to the vital organs such as lung, liver, blood vessels, heart, kidneys, skin, intestines etc. and they also play a critical role in wound healing. When fibroblast cells undergo mutations, they can become cancerous and become desmoid tumors (also known as "aggressive fibromatosis").
In the United States, approximately 900 people are diagnosed with desmoid tumors every year. This means that out of a million people approximately 2 - 4 people have desmoid tumors. Experts believe that the numbers are likely to be far greater because of the difficulty in correctly diagnosing this disease. Because of inconsistent and inaccurate reporting procedures, accurate statistics about the number of desmoid tumor cases have not been kept. Individuals between the ages of 15 and 60 are most often affected, but this disease can occur in anyone. The average age is 30's to 40's. They are slightly more common in women than in men (2:1), and there is no significant racial or ethnic distribution.
The Desmoid Tumor Research Foundation is the only foundation in the country dedicated to funding desmoid tumor research and finding a cure for this rare disease. DTRF-funded research seeks to determine what goes wrong in cells to generate these tumors, what medical and surgical options work best, and what existing drugs or potential new drugs could provide effective treatments.
For more information, go to DTRF.org.
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