Sexual Discrimination against men with Lichen Sclerosus.

ALSVH is the first patient advocacy in the world and has been running since 1994. Over the course of the years it has seen many changes in lichen sclerosus and been involved in published papers and helping with making medical policies to help EVERYONE who has lichen sclerosus. Our Governing document states that we must include men in any work we do and it would be a breach of that document to support such a biased project. It is therefore, with sadness that it has become necessary for ALSVH to boycott and condemn a particularly discriminative project that will not equally honour the needs of men and small boys. It has been discovered that a group of medics and academics will meet on 18th July, in London to start a James Lind PSP. You can read about it on the James Lind website. Two of the aims of a PSP are transparency of process and balanced inclusion of patient, carer and clinician interests and perspectives. On enquiry, we have been shown no evidence of a balance of male and female patient representatives. The aim is to spend many thousands of pounds to make a list of priorities for research into lichen sclerosus. Our Founder has had to fight in very aggressive correspondence to ask for men to be included in the steering group. She has had her character vilified by those whose main interest lies only in female lichen sclerosus. Only one person will represent men, a doctor, against a backdrop of a possible delegation of 20 others who are mainly concerned, or who are working with vulva lichen sclerosus. Patient representatives are all female. Lichen sclerosus is, perhaps, the only skin disease in the world to have been gender separated. If you look at eczema, psoriasis etc, you will find that gender and age equality exist. It was felt important that visitors to this site be aware of the very considerable power of those who sit around a table and make decisions for your lives and can exclude thousands who also suffer on the basis of their gender. Never, ever think that politics do not matter. They are the process that governs what treatment you receive, what information you are offered and whether you are important enough to be included in academic research or not. Those taking part have sufficient knowledge from years of seeing patients, to be able to come up with a list in a more cost effective way. Transparency and balance could have been achieved by the facilitators agreeing to include men at the very beginning of negotiations with this non-profit, instead, they declined to enter into negotiation and at the expense of men and small boys, which does not appear to be in accordance with the promises of the James Lind statements. However, there is professional kudos attached to undertaking a project of this nature for anyone ambitious enough to add it to their CV.

If you wish to comment, use the contact link.

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.
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.

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.