WELCOME to the Association for Lichen Sclerosus and Vulval Health. Supporting, educating and helping patients since1995. The World’s first advocacy organization for LS.
Vulva support meeting in Brighton (UK) in February 2014. Are you interested in meeting others? If so, email from the Contact page.
THE LATEST NEWS FROM BEHIND THE SCENES by Fabia
More and more I am making partnerships with doctors with the aim of working together to help patients. In this year, 2013 I was pleased to make some happy connections with doctors in the USA. I am calling it Doctors in Partnership with Patients (DiPPs)
Stem cell treatment in the USA
I was introduced to the work of Dr Elliot Lander of the California Stem Cell Treatment Centre, by a patient I met at a Pelvic Pain Conference in PA in April of this year. The patient spoke very highly of Dr Lander, who has been using stem cell technology to treat Interstitial Cystitis and is now offering the treatment to patients who have lichen sclerosus. I was pleased to meet Dr Lander in September at his clinic in Rancho Mirage, CA and to establish a working partnership with him. If you are interested in learning more, please contact Dr Lander through his website where there is a patient contact form.
Announcing a new centre for the treatment of lichen sclerosus at the University of Kansas Medical Centre. It was with pleasure that I accepted an invititation to meet the team of doctors at KUMC during September this year and to form a working partnership with them. I give particular thanks to Dr Danielle Staecker for the chance to visit the clinic and meet team members. Dr Staecker and I appeared on Fox4 Television News in an interview about lichen sclerosus. The centre has a multi-disciplinary team of doctors and will be happy to see men with LS as well as women. The contact details are as follows:
Dr. Danielle Staecker - Kansas University Medical Center, located in Overland Park Kansas. Pelvic Pain and Sexual Health Awareness Clinic 107th & Nall. 913-588-6200 is the main number at KU. Please request her clinic and express that you are seeing her for LS. This new clinic comes highly recommend by a patient representative in Kansas.
See the television interview here
Would you like to meet other patients with LS in the Kansas area? There is new trend for those with LS is to meet others, face to face rather than joining closed/private internet groups, where often, the vulnerable are overwhelmed by the amount of messages. I am supporting this new initiative and hope others will join in bringing a friendly face to the LS community.
Deenise Thorsen would like to invite you to meet her for coffee or lunch. If you live in the Kansas area and are feeling isolated or alone with your diagnosis of LS, Deenise will be happy to meet with you. In the longer term, Deenise hopes that a supportive meeting group will develop. To make contact with Deenise please send an email via this organization and it will be forwarded to her. firstname.lastname@example.org (or use the form on the Contact page)
Annoncing a new Director for the Association. Mr Martin Levermore has agreed to help me with a number of projects. Martin has a wide background in the medical profession and is to be honoured at Buckingham Palace, in the New Year, with an MBE for his services to business in his locality. Thank you Martin for being our champion and supporting us.
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.