Welcome

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

Awaiting a next date. Registration will be on a first come, first served basis. Use the contact email link to apply and for more information.

Meeting of Vulval Pain Society in June 2017

It is hoped that there will be a talk on the MonaLisa Touch at this meeting but we await confirmation from the organisers. Find out more at www.vulvalpainsociety.org

Are you interested in PRP?

ALSVH receives many emails each week from people who have lichen sclerosus, asking if there are any new treatments. The governing document for this non-profit states that we will give information about new procedures for lichen sclerosus. We are not in a position to endorse these treatments but are merely observing our governing aims. ALSVH is happy to share what is known for both stem cell and PRP, positive as well as negative information. There are studies for both procedures in progress at the moment and patient feedback has been positive. However we are not yet able to comment or enter in correspondence regarding the MonaLisa Touch and despite the many claims made for this procedure on the internet and by certain doctors, we have evidence from patients that they have paid many thousands of pounds and dollars and have not received the benefits that have been advertised and have gone back to steroid treatment. See article from Medscape. We ask that you do not abandon your steroid treatment at any time to undertake any other form of treatment, that you do not ignore the advice of your usual consultant.

Read more about PRP here.
NEW PUBLISHED PAPER – PRP IN MEN WITH LICHEN SCLEROSUS NOW AVAILABLE FROM DR CASABONA. Link here.
UPDATE INFORMATION ON PRP Review 9 March 2017 –
A request to publish one woman’s experience has been agreed by the Management Team and appears below.
I want to thank you for doing this. I am an older woman and have had lichen sclerosus for over 30 years. My clitoris has had problems for a very long time. All my doctors have told me that there is nothing to be done to release the skin over my clitoris, that I have to learn to live with it and have tried to send me to counsellors because they think I make a fuss about nothing. They have been really unkind and just do not understand. It damaged my self image badly and made my sex life unhappy. I have had PRP. To my great surprise, only a few minutes after receiving the treatment, my clitoris skin was released and I started to feel sensation. It feels unreal and unbelievable but it happened. I am over the moon and looking forward to my sex life again. I asked for my story to be put here because I do not want other women to suffer the way I did and hope it will help others. Thank you. My name is Jan and I live near London.

THE IDEA THAT SOME LIVES MATTER LESS IS THE ROOT OF ALL THAT IS WRONG IN THE WORLD Dr Paul Farmer, Medical Anthropologist.

Published Paper 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 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.

Have your say about research with our new poll

Access the link under the Information tab.
March 2017, this site received 79,285 visitors and yet only 87 of you wanted to vote! So many of you want to see more done but very few of you want to interact to bring about change. After all lichen sclerosus has been around since 1868 and if we do not get patient power, like other health conditions, we will leave a legacy of suffering for our children. Think of how the Breast Cancer Campaign and AIDS campaigns changed the way that people were helped. We work hard to support you, can you think about supporting us? Politics do matter.

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!

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.

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.

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