I really don't want anyone with this diagnosis to be afraid of the disorder. I myself have TSC1, and I've lived with it for the last 28, almost 29 years. Trust me, it can be a little unnerving and scary, but as long as you stay on top of it, get them the care when they need it, I promise you they can and will live a happy and successful life. Please feel free to contact me if you need any help or questions. I have so many great doctors and resources that may be helpful, and I'm going to start publicly speaking about it. This condition is rare, but more people than you'd expect have it. Let me know, please.
Kim
Kim
I had the same question as the original post and came looking for an answer. I'm pleasantly surprised but the positive prospect of the diagnosis and the long life expectancy. I'm a special needs teacher and my colleague has 2 students with TS in her class. It's obviously such an extreme case as neither of them will ever be able to do something as simple as comment on this site like so many of you have. Even though these girls have been affected so severely by TS it's lovely to see all these positive comments and that hopefully they too will live a long happy life x
My son was not diagnosed with TS until he was 12 and nearly died from a brain tumor. He was missed diagnosed as a baby and I was told he would not live to see 5 years. The TS had affected his heart. When skin lesions appeared on his back we were accused of burning him with cigarettes. Because of his learning difficulties we were accused of abuse. He is the youngest of 4. It turned into a 2 year nightmare. All his symptoms were put down to us, even headaches. It was only when he collapsed and sent to a London hospital was he diagnosed with TS. He is 37 now. He has 3 sons. 2 of whom have TS. My grandsons are healthy and the youngest with TS. Is taking his math GCSE a year ahead. I am sorry to hear about your niece but thankfully she has been diagnosed early like my grandsons and her health and progress can be kept an eye on. Xxxxxx
I have the same issue an im 28 years old the face will get worse with age an she will have it in her kidneys I got it in mine at age 21 an im still trying to cope with this I get picked on alot so I suggest home school to prevent it
I am truly sorry to hear that your loved one had this i found out i had it when i was in my late 20's and i have been through alot because ot it i have had a brain tumor removed fom the right frontal lobe of my brain i had a major stroke on my left side then after physical therapy i could walk and talk and feed myself then about a year later if that i had to have tumors burned off both my kidney's then a few years ago i had to have the scar tissue scraped from my brain i also have had 8 strokes all together but still walking i also have angeomyalopmoas hope i spelled that right and now after my brain was worked on twice i am left with some long term and short term memory loss but i am now 47 years old and take my life one day at a time so my story continues i have very good doctors taking care of me but most doctors where i live don't know a thing about what i have but i got lucky with the doctors i have because they know about it sorry to take up your time just thought u needed to know .....p.s the type i have they cannot treat so i just hope i have another day of life it's all i can can do but my mothet and my youngest daughter have been my rock could not have done the things i needed to without them btw my name is dana eaton god bless your family you r in my prayers.
I have 2 sons, one has been diagnosed as "probable TS" and is now 41 years old and is severely retarded having the mental abilities of a 18 month old with additional problems like seizures and kidney problems. He is on heavy meds to control aggressive and self destructive behavior.
The other son is almost 40 years old and appears to be normal except for low normal intelligence, hyper-activity, and has been diagnosed with lung and breathing problems - lung problems and found "lung scaring" The younger son is extremely aggressive with a violent temper and missed about 1/3 of school days during junior high and high school. He as had several failed relationships with females and my wife is terrified of him.
The (his) mother's family has a long history of TS including both aunts, mother, great maternal grand father, and maternal grand mother. Their family is into heavy denial and summarily rejects the causes of their TS problems as being caused by TS - the problems being mental retardation (developmentally disabled), hyper activity and aggression and occasional low intelligence.
My youngest son has been advised to seek genetic testing but he (age 39+) and his mother (age 75) reject any genetic testing. Fortunately, my youngest son has not reproduced. It is likely that former girl friends and a former wife, a health professional, decided a combination of a violent temper and 50-50 possibility of a TS child were adequate reasons to discontinue the relationship with the younger son, upon learning about the institutionalized older brother who survives day to day in a drug induced haze needed to control severe violent episodes.
The older brother has attacked care givers and these attacks have resulted in severe injuries such as broken bones. The older brother is especially violent to male care givers. About 15 years ago the older brother head butted me causing lots of black spots and a brief "knock out" - the technique used is to grasp both hands of the target and smash his forehead into your face aiming for the top of the nose.
The other son is almost 40 years old and appears to be normal except for low normal intelligence, hyper-activity, and has been diagnosed with lung and breathing problems - lung problems and found "lung scaring" The younger son is extremely aggressive with a violent temper and missed about 1/3 of school days during junior high and high school. He as had several failed relationships with females and my wife is terrified of him.
The (his) mother's family has a long history of TS including both aunts, mother, great maternal grand father, and maternal grand mother. Their family is into heavy denial and summarily rejects the causes of their TS problems as being caused by TS - the problems being mental retardation (developmentally disabled), hyper activity and aggression and occasional low intelligence.
My youngest son has been advised to seek genetic testing but he (age 39+) and his mother (age 75) reject any genetic testing. Fortunately, my youngest son has not reproduced. It is likely that former girl friends and a former wife, a health professional, decided a combination of a violent temper and 50-50 possibility of a TS child were adequate reasons to discontinue the relationship with the younger son, upon learning about the institutionalized older brother who survives day to day in a drug induced haze needed to control severe violent episodes.
The older brother has attacked care givers and these attacks have resulted in severe injuries such as broken bones. The older brother is especially violent to male care givers. About 15 years ago the older brother head butted me causing lots of black spots and a brief "knock out" - the technique used is to grasp both hands of the target and smash his forehead into your face aiming for the top of the nose.
Following up on the post regarding TS son 1 and 2. Their mother and I divorced 28 years ago. I keep my present wife away from both sons fearing severe injuries inflicted on a 78 YO woman having health problems
The man claims he "hate dispise (sic) loath tsc" not his daughter - I learned how to tell the difference many years ago. Every day involves "damage control" the one with a 18 month old child's mental abilities is in an institution. The younger one is an independent roaming menace and my best defense is separation by distance - hundreds of miles and 2 states away. At 78 I am as adult as I ever will be and my death would not be a solution to this ongoing problem.
my sister was told she would never move her body , and now walks and talks and is about to turn 18 years old !. each case is different
At least someone is facing the same issues as we are. My daughter is 16 and the behavior issues are getting worse and worse.
Hi, my daughter was 6 when I found out she had this awful disease, she's now 17teen its been one tough journey..... 2yrs ago i learned she now has angeomyolipfoma spots on her kidneys:-(
I have been looking for others to communicate with wjo has to live with this nightmare to!! Would love to keep in touch
I have been looking for others to communicate with wjo has to live with this nightmare to!! Would love to keep in touch
My sister is now 11. She has a very severe case of ts and is unable to communicate in anyway. She is on 4 medications and had a VHS installed when she was 7. me and my family have adjusted our life style to fit her needs and I love her with all my heart
I am searching for some assistance for my brother. He Has a Child with TSC . her name is Olivia and she is 13. I am wondering how in the world do you pay for 24 hr care. Olivia's mom walked out on her and her brother. And my brother works constantly to make ends meet. But he needs 24 hr care for Olivia she is a severe case. I have helped him for three years. He needs help with sitters do you have any advice.
Hello Kim. I am reaching out to you bc my 2 yr old was recently diagnosed with tsc. Would like to ask you questions?