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My dear niece is newly diagnosed with a rare genetic disorder, tuberous sclerosis. I am so very worried about her, and so very sad that that her life will be so different than her parents had hoped for. What is the life expectancy for people with tuberous sclerosis, if anyone would tell me that?

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So sorry to hear about this diagnosis. I know how hard it will be for the family right now. My son has tuberous sclerosis and is now 7 years old.
In terms of your question, Most people with TSC will live a normal life span. There can be complications in some organs such as the kidneys and brain that can lead to severe difficulties. To reduce these dangers, people with TSC should be monitored throughout their life by their physician for potential complications.
Hope this helps. Happy to answer any other questions that you may have :-)
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I was diagnosed with TSC at seven yeard old, I am now 52, I expect to live a full life, God willing, choose a physician and or specialist who can answer the family's questions, not just deal with symptoms, that is so important. God bless.
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My husband was diagnosed with TSC at the age of 3,the doctors at the time told his mother he would not live to see 30,  he is now 48 years old. And although he has had a rough life because of his seizure we have managed to raise 4 children together and live a very full life. My son was diagnosed with TSC last year at the age of 15. This came as a shock because I thought we had managed to escape it with our children. He is dealing with it quite well, living with someone with a siezure disorder makes you appreciate how easy things are for you. I wish you the best of luck and hope this helps.

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Hello i also have Tuberous Sclerosis and i will be 4- in november ow everone is saying there ages and im glad to see others survive butit also depends how serious the ts is and what body parts are effected from it its more then just seizures many other boy organs can be effected and make it more serious. I hop your niece don have any other organs effected cause then the meds for seizures can help keep them dormitt 

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My son was diagnosed with this 2weeks ago and I have too take my other son too the genic Dr too be test I not sure what too expect so any help and prayers would be greatly except
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Hi My mother passed away at 70 years old and I'm 38 living a full and happy life. I have 2 children ages 19 and 14. My youngest has TSC also and is a happy kid. She just need to get annual full check ups.
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mY 6 week old grand daughter was diagnosed this past week.  Pray for us

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I have had tsc since i was 3 mos old was diagnosed at 1 yrs old and I am now 31 married with 7 yr old son and 3 year old daugther that does not have tsc. Mine was spontaneous and no one in my family has tsc. So far I am living long life and glad that the tsc will not be passed on to my children or their offspring

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my precious son was diagnosed with TSC at age 18 months, and I was told he would be institutionalized by the age of 5 and would not live to be 13. We celebrated his 26th birthday this past September. Each TSC patient is unique. Find the closet TSC treatment center to your home and meet your new best friends there.

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I'm 14 years old, female, and I have tuberous sclerosis. My life has been extremely normal and I take honors classes in high school and make the honor role. Tuberous sclerosis hasnt effected my life other than having a few leaf spots on my back, legs, and arms. My parents discovered I had it when I hit my head on a locker and kindergarten and it showed up in a cs. I hope your neice grows up healthy and can be as lucky as I was to live a normal life. As far as I know, in unextreme cases, the life span isn't shortened only unless it spread to the lungs or kidneys. I hope this helped :)

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My son was diagnosed at 5. He is currently 13 a honor student and a star athlete. They said he would never be any of those things.
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My daughter was diagnosed at the age of 3 she started with seizures, they eventually went away by 11 she was taking no more medication for them , she is now 16 and has had none, although sepetember she just started school and when she suddenly was in a lot of pain , we went to hospital and she was having kidney bleeds numerous of them until January , it's a tough road ahead but we will get through this,her both kidneys are only working half way , we have to go to washington, or. Tennessee for something not really sure yet , hopefully they can help.. I'm having a hard time seeing her she lives at her dad's now because of the drs. And I have no car I'm just getting back on my feet again and I live 2 1/2 hrs away .but I put everyhing in God's hands maybe someone can help .
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There's tsc one and tsc two. My daughter has tsc two, and has put me and my family through hell. Hers afect the skin, eyes, heaet as shes had two open heart surgeries, and brain. BAD. No seizures physically just the stare off in lala land ones. But horrible behavior issues. She's downright evil and selfish. And wasn't taught or shown this. As she aged she got worse. Insomnia, depression, manipulative. Low intelligence. Pathological liar. Thief. Sociopathic symptoms with no remorse. No emotion. Dropped out at 15. Ran away at 16 got fake id. Started stripping. She had a baby at 17 by a 34 year old man and even hurt her baby. She doesn't listen AT ALL. Wasnt cooperative with counseling. Didn't take medicine. Would get mri and not be around when I had to take her to follow up appts. She was a unfit mother. Had the baby sleep with her in bed dispite my putting him in his crib. Explaining sids. And I found him in between her legs in the morning or up underneath her pillow. She didn't buckle him in the carseat and she even shook him. She dropped her cell phone on his head while laying in bed w him. All within his first month in life. She would nt buy his formula but go spend hundreds of dollars getting wigs nails outfits tattoos you name it. She wanted an abortion but nobody would touch her due to the heart condition. She eventually signed Over her rights to me. I kept the baby from the time he was a little over a month old I got him an mri make sure he had no injuries took him to all specialists. But she makes me hate dispise loath tsc. It ruined my life. And hers. As a adult she doesn't go to any of her appts. She has many sexual partners often and unprotected. Doesnt get herself on birthcontrol. And always says I don't care. Thus is my nightmare w tsc
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She has a disease! Yiur suppose to be a adault!relief
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