National Lichen Sclerosus Support Group

NATIONAL LICHEN SCLEROSUS SUPPORT GROUP
The first group in the world to be established for lichen sclerosus
A UK based voluntary group with an international membership and reputation
Celebrating 10 years of support and information 1997 - 2007

WHAT IS LICHEN SCLEROSUS?

Lichen sclerosus (LS) is an uncommon and poorly recognised, chronic inflammatory skin disease.
The cause is not known but it is thought to be an auto-immune related skin condition having strong links with other auto-immune related conditions such as thyroid, vitiligo and pernicious anaemia.
Any area of the skin can be affected but most commonly the anogenital area.
LS on other parts of the body is considered to be less common and is called extra genital lichen sclerosus.
LS mainly affects adult women. However, it can and does affect women at any age.
Men and young children (boys and girls) can also have lichen sclerosus.
There is no cure but treatment is available to help control the symptoms.
There have been no official surveys or statistics to ascertain the number of patients affected overall by LS.
It is estimated that one in 300 people may be affected.
Recent unpublished studies suggest that there may be as many as 10,000 new cases each year in the UK.
LS is not contagious and cannot be transmitted by sexual intercourse.
There is some speculation, that LS may be genetic.
There is a small risk of cancer of the vulva (and penile cancer)
LS tends to be a 'relapsing and remitting' condition, with good treatment, your symptoms may disappear for long periods of time and then flare up again

Lichen sclerosus is a complicated skin condition so a web site like this cannot tell you everything about it. Lichen sclerosus is also a condition which varies a great deal from person to person. Please use this web site as a guide to help you understand the condition and to help you in your discussions with your doctor, other health professionals who are treating you and your family and friends.

Don't be afraid to ask question about your skin condition and about your treatment. The more you know, the easier it may be for you to cope with it. Do not be afraid to tell your doctor all about your problems. The more s/he knows about how the disease affects you, the better s/he can prescribe treatment for your needs.