I am 21 year old who lives with this gift, everyday is a challenge to us, from people staring to being picked on for having "pimples"... I honestly wish that I could talk to somebody like me who shares this condition with me just to ask some questions and share story's, is awkward trying to explain how I feel to somebody who doesn't live with this... Still living strong!
If this gives you any hope at all, I am 30 and had been diagnosed with TS at 6 months old, I had a craniotomy at 9 yrs of age and went 20 yrs without having a epileptic episode...if you would like to talk about anything, you may contact me.
My husband and son have this disease. I did not know there was a rare diseases day. There is walk and some fundraisers done for this however not nearly as much as more well known diseases.
Count me in I have had Tuberous Sclerosis for over40+ years I would like to know more ,
Electricca2 2 months ago
I am 21 year old who lives with this gift, everyday is a challenge to us, from people staring to being picked on for having "pimples"... I honestly wish that I could talk to somebody like me who shares this condition with me just to ask some questions and share story's, is awkward trying to explain how I feel to somebody who doesn't live with this... Still living strong!
NINJATURTLE136PS3 5 months ago
I am a teen with TS. This really needs to be noticed more by the general public.
XCcrazychic10 1 year ago
If this gives you any hope at all, I am 30 and had been diagnosed with TS at 6 months old, I had a craniotomy at 9 yrs of age and went 20 yrs without having a epileptic episode...if you would like to talk about anything, you may contact me.
Tiger198030 1 year ago
My husband and son have this disease. I did not know there was a rare diseases day. There is walk and some fundraisers done for this however not nearly as much as more well known diseases.
ryanclemons1 1 year ago