About me: The Tuberous Sclerosis Alliance is the only national organization in the United States dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected.
www.tsalliance.org
Who I'd like to meet:
Tuberous Sclerosis Alliance's Friend Space (Randomized)
Hi Everyone, my name is Laura and my daughter is now 8 and was diagnosed with TS when she was a little older than 1 year old. I am looking to connect with other families helping their children adapt to life with TS. My child is struggling with now being aware of her differences.
my name is dawn...I am 33 and I have had TSC for 20 yrs I also have two kids with TS. I am the adult liason for the alliance of the heartland and it s great to see a area where we can all talk and compare stories
Glad to see TSA on Myspace! My son Joshua has TSC. He was diagnosed at about 6 months old. He is four now. There are still so many people out there that have never heard of it. We had never heard of it until we got the diagnosis. I pray they find a cure one day!
Any one near the west columbus area? I have a 3 year old and 19 month girls. would love to get with a mom and dad that Have a child with the same thing.
I have looked at a lot of the people's profiles on here, most of which are parent's with kids. I am 22 and was diagnosed with TSC when I was 4, I was the fifth person in WA. state to be diagnosed and my mom had to go through several doctors to finally get the right diagnosis. I am only affected by TSC cosmetically (angiofibromas on only my face [minimal] and some orange peel tissue on my lower back). I just wanted to say I admire you parents who struggle daily and strive to be educated out of concern and necessity for the well being of your kids :-] I admire you.
I am so impressed that TSA has become involved with myspace to spread the word about TS. My 8 year old daughter has TS, and it has been a very rocky road. It's so easy to feel alone when nobody seems to understand what you're going through. Thank you for helping us to connect to others who understand, so that we know we are not alone!!!
my son has tuberous sclerosis as well and its nice to see someone spread the knowledge , so that way people can try to help :) you all take care and i wish everyone the best of luck may god be with you all:) peace michael:)
Thanks for adding me to your page! My dauhter was diagnosed with infantile spasms when she was 4 months old, she is now 4 yrs old & just had a left hemispherectomy to control her seizures. I hope that this site will help eventually find a cure or more research about IS.
JUST STOPING IN TO SAY I AM PROUD TO BE PART OF YOUR SITE. I HAD MY (VNS)PUT IN WEDENSDAY. IT WAS IN DETROIT HOSPITAL, I STILL HAVE TO GO BACK DOWN TO HAVE IT PROGRAMED AND THE MAGNETIC BRACLET PUT ON. OTHERWISE A LITTLE TENDER.. BUT, DOING BETTER.
NICCI
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