My Nonprofit Reviews

I discovered bumps on my fingers when I was 4. I knew I was different and as the bumps (tumors) spread to my feet and then I started to get small bumps on my face, I knew I really was different. In my mid 20's, I went to a dermatologist who got a group of doctors together and said those words I'll never forget: Tuberous Sclerosis! I went to Scripps Medical Library in La Jolla,CA and this little tiny book said I should be retarded and would die at 33 and all sorts of scary outcomes. It was at this time, I contacted a doctor in LA who specialized in it and she had never met someone with TSC who had a job, drove a car and lived alone. She said I had a mild case. I moved to Seattle and met my first group of TS people and saw the varying degrees of cases! I was scared to death! Through the efforts of these first people to my testings at NIH, I discovered that TS was way more prevalent than I originally thought. I have since met my peers and the president (Kari) and traveled to Washington and I send out letters for politicians to help us find a cure. I am 56, have 5 tumors in my brain, my fingers & toes and my kidney has a tumor. I also have tests (MRIs, etc) every year to stay on top of my condition. I am so confident that TS Alliance is one of the best non-profits ever and that the work they are doing for all of us, from newborns to my age has made life more tolerable and by sharing this information with other sufferers has brought me close to people around the world. I am always willing to share my story especially with newly discovered cases in babies, talking with their parents and I am proud of the TS Alliance for being there for me all these years. Thank you. Lisa Bennett

More Feedback