Lichen sclerosus is a chronic inflammatory skin disease. Mainly affecting the genital skin. It affects men, women and children at any age. It is known to be a progressive condition that relapses and remits. There is no cure. Progression may lead to loss of genital features. There is a small risk of genital cancer in men and women. The internet promotes a theory that it is an auto-immune disease, nobody has yet has been able to prove it. Whatever the cause, it manifests as a dermatological condition. Other factors may play a role. It was first identified in 1887. It is agreed that this is a frightening long term disorder and our aim is to help you with information and education to gain a good quality of life. This complex disorder has simple treatment with a high success rate in calming symptoms and delaying progression.
"I am new to this and I feel afraid."
A New Word In Vulval Health
Our founder has just returned from a European Vulval Conference that she describes as VULVALICIOUS! Meaning all the delicious information available for vulva disease. This word can be used to describe all things good, that help vulval conditions. A new kind of awareness?
We are looking for a solicitor, qualified in Equality Law to offer some Pro Bono advice. Please get in touch if you can help.
Journalist seeking young male or parent of small boy for awareness article - Please help
Vulval Health Awareness Campaign - Vulval Cancer and VIN
CROCHET FLOWERS FOR VULVAL CANCER AND VIN. If you would like to take part please email firstname.lastname@example.org
Newly published (April 2018) British Association of Dermatologists Guidelines for Lichen Sclerosus
PRP in the UK for Men and Women
This information is given under a legal disclaimer. It is offered to the many people who email to ask where they can find this treatment, while we are happy to share the names of doctors we believe to be of good reputation, we cannot accept any liability for any situation arising from your choice. We can share that the success rate is high for both men and women.
Dr Sherif Wakil
Dr Shirin Lakhani
You can also ask Dr Wakil about laser treatment.
UK Members of Parliament now support Lichen Sclerosus
Peter Kyle, MP for Hove and Chris Williamson, MP for Derby North are supporting our requests for more awareness, better education and information. Both MPs are willing to be contacted by other Members of Parliament who may be contacted with similar requests.
and visit the new AWARENESS AND EDUCATION PAGE
Sexual Discrimination against men with Lichen Sclerosus.
If you wish to comment, use the contact link.
THE IDEA THAT SOME LIVES MATTER LESS IS THE ROOT OF ALL THAT IS WRONG IN THE WORLD Dr Paul Farmer, Medical Anthropologist
Have your say about research with our new poll
Access the link under the Information tab.
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 1887 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.
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.