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)
I would like to know now that "vigabitrin" is approved by the FDA ... does anyone know if u can get it thru a pharmacy in the usa ... i live in VA and i have been getting "vigabritrin" thru a pharmacy in canada thru a pharmacy in NY and was wondering if it is available thru insurance yet.... If anyone knows more about this can u please let me know....
hey!! I just decided I would write a little something for this:
well my name is hannah and I have tuberous sclerosis and I am just beginging to come out to the world and tell people what I have because I have been to embarresed. I have been getting lazor sense I was 3 but have recently stopped and got plastic surgery and all my spots are mostly gone.
I just would like to say that you guys are doing a great job with everything and keep up the great work =)
hola a todos me gustaria poder hablar con alguien ,mi amiga acaba de tener una bebe y tiene tuberous sclerosis y la verdad no sabemos mucho de la enfermadad ojala alguien de ustyedes nos puedad a yudar ,gracias
Hi Everyone-My son, Charlie,was diagnosed at birth with TSC. He has rhabdomyomas, AMLs, and too many tubers in his brain to count. He has tonic clonic seizures and infantile spasms. We are from Louisiana and would love to meet other TSC parents. Also, please feel free to add me as a friend.-Missy
Hi everyone. I just wanted to give an update on my son. His surgery was a success. Both tumors were removed. We are home now. He's been sick. He ate for the first time this morning. Recovery so far has been stressful on him & myself. The neurosurgeon made an "s" shaped incision on the top of his head. I guess it takes about 1 month for the flesh to heal, & three months for the skull bone to fuse back together. I am soooo relieved the surgery is behind us!!!!! I'm very thankful for this my space page by the way.
Hi everyone. My son Noah's surgery is today. The neurosurgeon is going to try & remove a sega tumor in the left ventricle, & attempt removal of smaller one in the right venricle. I just wanted to put the word out & have plenty of prayers in the air. Thanks!
Hi everyone~ my son has TS, & he is 11 now. We just found out from a recent MRI that he has a sega giant cell tumor on the left side of his brain plus another one on the right is starting to develop. He has 8 nodules, a cluster of cysts on his right kidney, & had a heart ablation surgery 3 years ago,also all the typical skin symptoms. I really wanted to know if anyone out there can get back w/ me if you or your child has had the "sega". What was the outcome? did you/they get on "Rapamycin"? Thank you.
hi all,i have a 21 year old daught er(robin)with tsc,she had brain surgery at 5 to contrrol siezures,but they came back about 2 years ago and they were worse than before,we also have alot of behavior problems with her,i love but i have my days lol.most days shes a loving kid.mentaly shes about 14. we are having alot of trouble finding a place for her to work because theres no funding any where,where we live so she stays at home most days.i would love to talk to anyone else who has this disesase or parent.dont think ive ever talked to any body else with tsc or parent. so feel free to email me any time at hawney1111@aol.com.thanks theresa
hi my name is Lori and my daughter was diagnosed at 5 months with TSC and she is doing alot better now since she has been on vigabatrin and i am soo glad that everyone is working hard to get it approved and we are almost there ...YAY... but if there are any families in Virginia that wish to share info or would like info you can add me or anyone else in other states i might be young but i have learned alot about TSC and thats because its serious and i love my daughter i was devastated when i found out about her having TSC but the more i learn the more i stay focused that one day someone will help us find a cure for this rare but serious condition so keep your heads up everybody and know that your not alone and me, my daughter, and my family understands what your going through and its okay its hard but it will get better atleast thats what i pray for everyday and every night i look at my daughter and pray!!!!!!
Hello... My 17 month old was diagnosed with TSC just last month and we still have questions that maybe families currently living with this disease can answer. I am in TX and would like to connect with people dealing with TSC.
Hello everyone:) My son is now 16 months old and he has TSC. He was diagnosed at 10 months old...so not really that long ago. We are finally able to cope with the fact that our little guy has TSC but it wasn't easy to hear the news when we first found out! I would love to hear from other families who also have someone affected by TSC. Feel free to contact me...I know that support from others is amazing during tough times!
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