Urgent call for help with research -mid August in the UK

I am a research fellow at the University of Warwick and I am currently developing a research project which will be about LS. In order to do this, I would like to get input from some LS patients on the research and I will host a focus group next month. Is there a chance you could circulate information about this to patients? I would be looking for up to six women, ideally who live relatively near the University of Warwick, although there is a possibility of telephoning in. I can offer £20 an hour payment and also reimbursement for travel expenses. s.rees.1@warwick.ac.uk

Do Children Matter?

Awareness for lichen sclerosus focuses on adult women only. Medical politics and the voices of adult women are largely the cause for this. Not to say that this is wrong but does anyone consider the plight of children, diagnosed as young as two years with lichen sclerosus and condemned to a life sentence? Recent studies by this Association show that every skin charity in the world is inclusive of ALL ages and gender in their awareness and information and that lichen sclerosus is one of the few skin conditions that is unequally represented. Search and you will find much about vulval lichen sclerosus for adult females but search for information for the parents of children only to find limited, vague, or unhelpful items. Please contact the Association if you are willing to work together towards making a better future for children. The Association finds that many paediatric dermatologists are not even educated enough about lichen sclerosus to think about offering the simplest of advice to include using emollients for children.  The Association over 20 years, notices that doctors have the privilege and duty to act but only a few really dedicated doctors really try to make a difference.  Change is needed.
Dangerous world it is, not because of those who do evil, but because of those who look on and do nothing…… Those who have the privilege to know, have the duty to act.” – Albert Einstein

Do You Have VIN?

Check out a new Google community where you can make contact with others and have discussions. Follow the link and ask to join. You may wish to set up an alternative email address to protect your identity. https://plus.google.com/u/0/communities/112863741331784065635

New Study 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 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.


The Association is pleased to announce a new non-profit for lichen sclerosus. Please visit www.ilsvh.org
The Association, based here in the UK and the ILSVH will be working closely together. Please support the Institute for Lichen Sclerosus and Vulval Health in the first research project they are undertaking, by donating generously via their website. It is essential that those with lichen sclerosus support research into any new treatments. The ILSVH website will be expanding to give further details of future initiatives, so do visit them regularly and please stay in touch with the Association too. Working together, we hope to move forward and relieve the suffering for everyone with lichen sclerosus.

Lichen Sclerosus Breaking News:

There have been no new items for this page since the end of 2015 but the page is still well worth reading. Click here to learn more.


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.