Informal Face-to-Face meetings in East Sussex, UKThe first meeting of this small, confidential group will take place on Saturday, 25th March 2017 in Brighton (UK) between 2pm and 5pm. Registration will be on a first come, first served basis. Use the contact email link to apply and for more information.
Invitation for men and women to take part in a study for PRPThe 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 near 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 PUBLISHED PAPER – PRP IN MEN WITH LICHEN SCLEROSUS NOW AVAILABLE FROM DR CASABONA. Link here.
UPDATE INFORMATION ON PRP STUDY 9 March 2017 – Study is now in progress and there are a few places left.
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 just took part in the Study and 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.
Have your say about research with our new pollAccess the link under the Information tab.
February 2017, this site received 72,200 visitors and yet only 57 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 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.
New Study 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 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 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.