About me

I am just starting this page so give me a little time to get it up and running. I have been living with a desmoid tumor for 5 years now The first 4 and a half doctors said I was crazy and told me there was nothing wrong then they found it when I was 6 months pregnant. I had the baby and 3 weeks later 6 lbs of tumor was removed from my right gluteus muscles. I was good for about5 months before it returned. Now, a year later, I am still in constant pain and working with doctors trying to find drugs to help my life become manageable. The longer I have this, the more I desire a support system. I cannot find one, so I am creating one. If you or a loved one are suffering with a desmoid please help me group and find a voice so we can be heard. We need to find a cure and we need to support one another!!!