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Conditions

Tuberous Sclerosis

Tuberous sclerosis on the face

Tuberous Sclerosis might sound like something you’d find in a hanging basket, but the name actually refers to growths that form on the brain which look like rounded swellings (tubers). Affecting around 8,000 people in the UK to varying degrees (less than 1% of the population), it is essentially a genetic condition caused by a problem with one of two genes involved in the process of growing cells in the body. Tuberous Sclerosis sufferers are more at risk of epileptic fits, kidney problems, autism and heart problems. The condition also has a tendency to appear as marks or lesions on the face, which can be uncomfortable and distressing. While there is no cure for TS, people can live normal lives and treatment is available for the symptoms. However, some people are so mildly affected that the condition is never even diagnosed.

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My 4 year old son has TS, his dad had it, his dad was 31 when he died last year March. My son has had Epilepsy since he was 2 and he is now at school, he has very extreme behaviour problems and he is very challenging, he has had a test done for Autism and the doctors say they can't diagnose him with it as he is epileptic and on medication. My sons school only have him for 2 hours a day, which simply is not enough. I am very stressed with all this any advice for a desperate mum?





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I was only diagnosed with lichen sclerosis last week and seem to be having a bad reaction to the steroid cream prescribed by my doctor. I would be very grateful for any advice about getting some relief from this horrible condition.





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lichen sclerosis is not the same as tuberous sclerosis at all my daughter has tuberous sclerosis she was diagnosed at 11 Months it's an awful condition she has epilepsy and leaning difficulties





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hi i have tuberous sclerosis i was diagnosed at 7months iam now 41 yrs i have epilepsy and learning difficulties and dyslexia aswell but i have got there my schooling wasint the best nonoe knew how to tackle dyslexia back then but now it is different your daughter will be fine she will have a lot more resources at her disposal if you get her help early she should be fine having Ts is not a death sentence

I'm 16 years old and I have had TS since I was very young. I have the lesions on my face and i have ash leaf spots on my legs and random places on my body. It's really embarassing. I've gotten lasers but they havent really done anything. I cant wear shorts and I always have makeup on to cover the redness on my face.





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hi i was diagnosed with TS at 7months old i know what you are going through i remeber going through all this at 16 and younger you will get there i saw a fantastic dr and now i am fine some of my rash has comeback but when they are red i use neutrogena it is fantastic you will get there if i can anybody can

i have had ls for 1 yrs it really gets me down & sometimes i cant even bare underware on i have never spoke to any one that has it if anyone would like to get intouch with me please do x





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i ve had ls for over 10 years .The pain from the lesions is terrible dermovate nn helps but makes skin so fragile thus even moving the wrong causes splits .helium tape works but only allowed use it short term.Good luck





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I agree with Francesca. More research is needed into Lichen Sclerosis. I am 29 and have been suffering with it now for a long time, unfortunately it only got diagnosed properly just over a year ago. My sex life has suffered severly, my boyfriend has been fab but i can count on one hand the amount of times we have been able to have sex over the past year. I had an episiotomy in Oct 09 which has helped a bit but not back to anywhere near normal yet. I go to see my gynae doctor every 3-6 months to keep things monitored and on track but it does get me down.





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I have linchen sclerosis.My vagina is now very tight and small opening. On 'Fiver' programme last night they said it was due to a break-down of the immune system and creams (of which I am using) can only slow down the advance of this disease which can lead to the whole of the vulva 'closing-up' on itself.Nobody seems to know much about it.PLEASE can rigorous research be carried out as soon as possible as it is such a devasting problem.





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I was diagnosed with lichen sclerosis over 2 yrs ago and was told the only treatment was steroid creams and there was no cure. I also have narrowing of the vulva and my clitoris has completly disappeared,so I stopped the cream and started to use honey instead and a recent biopy showed only dermatitis,I have no further discomfort and the vulva area is free of any symptoms, I was hoping my consultant might find this of importance but she didn't seem interested,she didn't even examine me, I was told to make an appointment for next year...while she was looking at her watch and putting on her coat...I am so frustrated that I can't get this message out there especially to the young sufferers who are looking at a lifetime with this, I am 78yrs old and it was bad enough for me, PLEASE can someone help spread this message

This is very interesting as I have just been disnosed with Lichen Sclerosis. The though of using these steroid creams is worrying. What kind of honey did you use? Was it Manuka?

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I have extremely mild TS and used to suffer from epilepsy as a child of 15months up until the age of seven. Me and my partner are hoping to start a family soon and I was wondering if there were any advanced tests which can see if you can pass this genetic disorder on to your children?





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I have been told I have linchen sclerosis, I am so depressed as I have constant splitting and sorness and iching on the outer and inner part of my labia. Cannot possibily have sex and in pain all the time, is there any hope for me as I feel very upset for myself and my husband. I cannot get any relief from this. I am a 55 type 2 diabetic and never use anything with chemicals or soap in my washing and only using aqueous cream which was prescribed by my Doctor. Can anyone help me.





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Content supplied by NHS Choices

Tuberous sclerosis is a rare genetic condition that causes non-cancerous (benign) tumours to develop in different parts of the body including: Read More »

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