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nursesrock

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1 reviews

Review for NATIONAL TUBEROUS SCLEROSIS, Silver Spring, MD, USA

Rating: 5 stars  

My story started a little over 18 yrs ago. I was told that my unborn baby probably had "Tuberous Sclerosis". What was that? We were scared, had never heard of that before, we were so lost. As soon as he was born a couple of days later, we met Dr. Northrup, as to I delivered out of the hospital she worked at. I didn't know that before I was sent there to deliver. Being the ever so knowledgeable on TS, she made the diagnosis, ran all the test and answered all the questions. I immediately, googled Tuberous Sclerosis and how to get connected with anybody. The website came up, I got in contact, met some local families, which I have been friends with for 18 yrs! I chaired our local chapter for many yrs, went to March on Capital Hill, and attended a couple conferences. They are amazing in everything they do! Such an amazing organization and the many ways they help those affected and their families. I honestly don't know what I would have done without them!

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