This web site regularly attracts in excess of 75,000 visitors a month. It was the first non-profit patient advocacy in the world and the first to publish a website.
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. However, this has never been proven and the cause remains unknown and unclear. 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 to gain a good quality of life. This complex disorder has simple treatment with a high success rate in calming symptoms and delaying progression.
IMPORTANT RESEARCH – HELP NEEDEDPeople with lichen sclerosus are always saying there is not enough being done and not enough real research. Now is your chance to step up and take part in important research in the USA by well known Gynaecologist, Andrew Goldstein. ALSVH would like to support him in this research. He comments as follows:
I currently need 4 more women for my PRP for LS study. They must be off of any treatment for at least 8 weeks (preferably longer) and have active LS (must be confirmed by a new biopsy and by my exam). They will be getting two treatments of PRP and then have a biopsy 6 weeks after the last PRP treatment to determine efficacy. Therefore the study requires 4 visits to my office – the first and last can be done in NYC or Washington but the 2nd and 3rd must be done in Washington. There will be no other investigators (for many reasons) or investigator sites. I cannot provide reimbursement for travel or hotels. Even though it is placebo controlled, if I show efficacy I will treat the women who got placebo with PRP after the trial has finished. Info and the informed consent can be found at http://www.cvvd.org/research
Secondly, I will be starting a genomics and proteomics study of LS- This will be a very ambitious and extremely important study and I have received a grant of almost $400,000 to fund it. I need women with two or more family members (3 or 4 family members is even better) to come to Washington DC for only one visit. They will have 2-3 biopsies and blood drawn. A limited budget for travel (up to $500 per person) may be available. All family members who have LS must come and have biopsies and it is preferred that they have not had recent treatment and have active LS. We will start this study in October.
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.
Published Paper Shows Benefit of Using Topical SteroidsThe 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 pollAccess 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 USAAccess the under the Information tab.
Emergency Appeal – A BIG Thank YouThank 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 helpSomething 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 sclerosusTo 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.