Invitation for men and women to take part in a study for PRP

The Association wishes to support a doctor who wants to undertake a study of PRP for lichen sclerosus.  Treatment will be offered at a reduced rate for anyone wishing to take part. Study will take place in London. Invitation is open to both men and women. Twenty people are needed. Use the contact email and head your enquiry PRP STUDY. Read more about PRP here.

New page dedicated to visitors from the USA

Access the under the Information tab.


Emergency Appeal – A BIG Thank You

Thank you very much to everyone who responded to the appeal for donations towards a new laptop. Delighted to report that we now have the new laptop and are able to continue supporting people with lichen sclerosus. Email replies can resume. Less than 30 people donated for this cause and if you find help here in the future, you will have them to thank for their kind generosity. To quote a famous UK politician ‘Never have so few done so much for so many. ‘From Fabia and the Management Team, a big, big thank you!

Legal Announcement

The Management Team and any officers or volunteers of this Global, UK based Association are not in anyway connected to the USA ILSVH or to Dr Charles Runels of Fairhope, Alabama. This Association does not support or have any communications with the USA ILSVH. Any claims by third parties of a connection are false.

Informal Face-to-Face meetings in East Sussex, UK

Meetings will start very soon. Either in December 2016 or in early 2017. Numbers will be small and places will be on a first come first served basis. Meetings will be for lichen sclerosus, VIN and vulval cancer. Use the contact email link to apply and for more information.

You can help

Something you would like to suggest for this website? Write in using the Contact Us link.

Do You Have VIN?

Would you like to join an online support group for VIN and vulval cancer? The community group is by invitation only. Please use the contact email link to ask to join.

New Study Shows Benefit of Using Topical Steroids

The internet is responsible for misleading information about potent topical steroids to treat the symptoms of lichen sclerosus. Patients who have been badly advised by uneducated doctors are spreading fear messages. The new study from Australia shows one of the biggest benefits of steroid treatment and illustrates what a dedicated, well educated doctor can do to improve your quality of life. Read here.

Current Challenges for People with lichen sclerosus

To make an awareness amongst family doctors and the general public.
To ensure sufficient awareness and education to facilitate a good outcome for the very young children who are being diagnosed now and who will have to grow up with LS. To make a future for them.
To encourage medical professionals to research the truth, whether or not using potent topical steroids does delay or prevent progression to vulva cancer. There is some anecdotal evidence to support the theory that using steroids may be a factor in avoiding vulva cancer.
Educate patients and doctors on the truth about steroids. Encourage good education and abolish the across the board statement that ‘steroids thin the skin’.
Raise the profile for lichen sclerosus in men and male children.