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Genetic and Rare Diseases Information Center (GARD)

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Lichen sclerosus

Other Names for this Disease
  • Lichen sclerosis
  • Lichen sclerosis et atrophicus
  • Lichen sclerosus et atrophicus
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Your Question

My doctor told me I have lichen sclerosis. What is this condition?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is lichen sclerosus?

Lichen sclerosus is a skin disorder that can affect men, women, or children, but is most common in women. It usually occurs on the vulva (the outer genitalia or sex organ) in women, but sometimes develops on the head of the penis in men. Occasionally, lichen sclerosus is seen on other parts of the body, especially the upper body, breasts, and upper arms.  Other names for lichen sclerosus include kraurosis vulvae and hypoplastic dystrophy.[1][2]
Last updated: 1/8/2013

What causes lichen sclerosus?

Currently the cause of lichen sclerosus is unknown. It is not thought to be infectious. An overactive immune system may play a role. Some people may have a genetic tendency toward the disease, and studies suggest that abnormal hormone levels may also play a role. Lichen sclerosus has also been shown to appear at sites of previous injury or trauma where the skin has already experienced scarring or damage.[1][3]
Last updated: 8/31/2012

What symptoms are observed in individuals who have lichen sclerosus?

The symptoms are the same in children and adults. Early in the disease, small, subtle white spots appear. These areas are usually slightly shiny and smooth. As time goes on, the spots develop into bigger patches, and the skin surface becomes thinned and crinkled. As a result, the skin tears easily, and bright red or purple discoloration from bleeding inside the skin is common.[1] 

Symptoms vary depending on the area affected. Patients experience different degrees of discomfort. When lichen sclerosus occurs on parts of the body other than the genital area, most often there are no symptoms, other than itching. If the disease is severe, bleeding, tearing, and blistering caused by rubbing or bumping the skin can cause pain.[1]

Last updated: 8/31/2012

Is there treatment for lichen sclerosus?  Can it be cured?

The mainstay of treatment for lichen sclerosus is strong corticosteroids such as clobetasol propionate, which has proven successful in some patients.  Although less strong corticosteroids may relieve the itching, they do not normalize the skin texture or prevent scarring.  The application of strong corticosteroids alleviates itching within a few weeks; however, application must continue for several months in order to correct the texture and color changes that have occurred.  Patients should be followed monthly to monitor the skin for side effects associated with steroid use and for improvement so that the frequency of application can be decreased.[2]

Although no other treatments produce the striking and prompt benefit of strong glucocorticoids, other treatments have been successful in some patients.[2] Tacrolimus (Protopic) ointment has been reported to benefit some patients, but more research is needed to confirm this. Tacrolimus is a steroid-free ointment; it is not a corticosteroid. Tacrolimus has no apparent side effects other than local irritation in some patients.[1]

Sometimes, people do not respond to the ultrapotent topical corticosteroid. Other factors, such as low estrogen levels, an infection, irritation, or allergy to the medication, can keep symptoms from clearing up. Your doctor may need to treat these as well. If you feel that you are not improving as you would expect, talk to your doctor. [2]

More information on treatment of lichen sclerosus can be accessed through DermNet NZ and the Treatment and Medication tabs on the Medscape Reference web site.

Last updated: 1/8/2013