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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.

What the Men in White Coats Say

Comments and Questions

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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 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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Dear sir, madam I have IS since last two year. I have lungs TS in my neck,Actually i have repaid again. The first time i had October 2006 and i took medicine but doesn't work and again repaid now i am taking medicine but my neck's soling going down but still paining So this time dost it working or not if you have any idea or something pls reapply me i will appreciate. suja





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No





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I have TS. I have read there is a new drug being tested which originates from soil on Easter Island in the Pacific. Is this available yet?





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It looks like no one else has asked this question, so please fill in the rest of your details below.





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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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