Conditions
Tuberous Sclerosis
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.
Comments and Questions
You can share your experiences and thoughts with other Embarrassing Bodies site-users below. Comments & Questions are reviewed by moderators, but if you see anything on the site that worries you, please report it and one of our moderators will look at it as soon as possible.
Please note: Unfortunately Channel 4 cannot respond to individual inquiries. If you have any concerns, you can check out NHS Choices, but ultimately it is always best to check with a health professional.
Important Notice
The information provided on this website (including any NHS Choices medical information) is for use as information or for educational purposes only and is not a substitute for professional medical care by a qualified doctor or other qualified healthcare professional. We do not warrant that any information included within this site will meet your health or medical requirements. This Embarrassing Bodies site does not provide any medical or diagnostic services so you should always check with a health professional if you have any concerns about your health.
If you want to embed our videos in your site, read our embedding T&Cs here
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
Reply to this comment Report this as offensive
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.
Reply to this comment Report this as offensive
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.
Reply to this comment Report this as offensive
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
In reply to Francesca Report this as offensive
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?
In reply to Francesca Report this as offensive
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?
Reply to this comment Report this as offensive
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.
Reply to this comment Report this as offensive
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
Reply to this comment Report this as offensive
No
Reply to this comment Report this as offensive
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?
Reply to this comment Report this as offensive