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.AWARENESS AND EDUCATION PAGE Also join a dedicated awareness group on Facebook. No personal story sharing, only awareness posts please. https://www.facebook.com/groups/279280739245005/
Follow two women in the USA who are benefitting from a new treatment for fusion.https://mylichensclerosusjourney.blog
IMPORTANT USA RESEARCH – HELP NEEDEDHelp Dr Andrew Goldstein with important research.
1) I have one spot left for my PRP study in Washington DC. This is your chance to try a completely novel treatment that uses your own bodies regenerative abilities to treat LS. You must have active LS and no treatment for 12 weeks.
2) Genetics and gene expression in lichen sclerosus. I’m looking for families with 3 or more family members with LS. It is best if you can come to Washington or New York but we can use blood specimens taken by your local physician ( less useful). Please help me to figure out the EXACT inflammatory pathway that causes LS. This will lead to more effective and safe treatments.
3. I will be starting a fractional laser study in April in New York City (ONLY!). While many of you have been offered Mona Lisa Touch or other laser treatments, NO ONE KNOWS if this is actually safe or effective. I have read EVERY paper and abstract on this subject and trust me, any reassurances you have been getting from ANYONE are not based on appropriate data. Most physicians are using lasers because they are a great way may to make money outside the insurance system. Even if it is safe and effective there is absolutely no data on what are the appropriate power setting or number of treatments necessary. I know that some people have had improvement but this is based completely on symptom improvement. This is important BUT remember vaseline decreases symptoms by up to 70% and it does not treat this EXTREMELY inflammatory disease. Only treatments that DECREASE INFLAMMATION can lower the risk of cancer! Therefore, I am extremely pleased to announce that I have received a grant to do a well designed clinical trial using a fractional CO2 laser. It has taken 2 years and countless hours to FINALLY put science AHEAD of the hype!!! So I am offering 40 women the opportunity to participate in this study. There will 7 visits in total with 5 laser treatments (most doctors “offer” 3 treatments at a cost of at least $2000!) I have heard your comments regarding my other studies so I made some changes in this study. Firstly, you must be off any other treatment for ONLY 4 weeks (much shorter than the PRP study), and there is up to $1,250 reimbursement for travel! You must have active LS on a biopsy at the beginning of the study and must have a 3/10 on itch scale. I will be posting the informed consent to my website WWW.CVVD.org in approximately 10 days.
PRP – Stem Cell – MonaLisa Touch – ThermiVaInformation coming soon.
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 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.
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.