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Jyoti C.

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1 reviews

Review for National Tuberous Sclerosis Association Inc, Silver Spring, MD, USA

Rating: 5 stars  

I was diagnosed with TS in my 20's nearly 20 years ago by a dermatologist in California. It was a bit scary as the dermatologist pulled together seemingly random birth marks and skin abnormalities then brought me a big medical book with a shocking pictures and information of disease in the book he said it looked like I had. I looked at the pictures and saw many images that looked like my skin, but worse, and other things that didn't. I also read that there were more serious symptoms like seizures, organ failure issues, and mental delays. We scheduled a scan of my brain and discovered I had calcified lesions which indicate there may have been issues as one point, but not anymore and at age 20+ most likely they would not become active again. I was just finishing college and moving from California to Texas and he told me to look up the Tuberous Sclerosis Alliance when I got there and I did. I discovered that TSA maintains an amazing website to help inform TSC individuals, their families, and their doctors understand the symptoms of the disease and the current screening recommendations based on top researchers. This has been very helpful to me as many doctors are not that familiar with TS and most of the time seem to pretend they know it, but you can sense they don't, and when they look it up in their books and other tools sometimes they have old information about what the best options for you are. I know this doesn't mean they are bad doctors, but it means that the information that TSA provides is critical to guiding your doctors to provide you with the best medical care they can. This is a key point for me, but TSA also offers much more, such as information on NIH studies for TS and TS related issues. I was part of a study once too and when I came home one of the people at the TSA found out I'd been there and told me how much she'd wished I'd told her as she would have come to visit me. That was when I realized that from the national to the local TSA was a family of people who really care. It has been a privilege and an honor to know and be part of this amazing group of people, and help in small ways by providing an example to TSA parents of the mild end of the spectrum of this disease, and to be part of sharing with other adults our experiences. I continue to see TSA as a key life raft that is big enough for everyone and open to anyone anytime and that is there for me whenever I need it and with real people on it ready to help me and others in any way they can. It is very special and thinking of it now I have a nagging worry that it is rare and not all people are lucky enough to have that kind of support.

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