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A Non Profit Organization for Over 20 Years

The Association for Lichen Sclerosus and Vulval Health. Supporting, educating and helping patients since1994. The World’s first advocacy organization for LS. Charity reference number EW10262.

February is VULVUARY the Vulval Health Awareness Month

VULVA PAIN SOCIETY SUPER WORKSHOP 9th MAY 2015 in LONDON
Lichen sclerosus is not a pain syndrome.  However some patients may have secondary pain conditions, that cause long term nerve pain that do not respond to steroid treatment.  If you are one of these patients, you may find the workshop in May helpful.  The talks will focus on pain, not lichen sclerosus.  Fabia will be in attendance but will not be speaking on lichen sclerosus, she will be happy to speak to you during lunch and coffee breaks.  Details via this link.
http://www.vulvalpainsociety.org/vps/index.php/meetings-and-workshops

NEEDED…Willing UK Volunteers to be case studies for a media article. Please make contact if you are interested.
NEW PAGE – BREAKING NEWS
Visit the Breaking News page for information about:
Good news for men with LS…New treatment now available in the UK
What is a Vulvateer?
A new book written for sufferers by a sufferer
Why parents of children are advised not to stop steroid treatment
A forum for those undergoing or considering stem cell/fat transfer or PRP  treatment in the UK is now in operation. Email to obtain and invitation.  Head your message ‘Forum’ please.
Find out how you can help to support an international patient event in Canada in 2015.
Do you have lichen planus as well as lichen sclerosus? Details of how to find support.

 

Current Challenges for People with LS and Vulval Health Issues

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.

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