Association for Lichen Sclerosus

About

Fabia Brackenbury, Founder, Association for Lichen Sclerosus web manager, education/information co-ordinator, patient leader, author and broadcaster.

  • Information here has been gathered from regular contact with the BSSVD, ISSVD, BAD and by attendance a many global dermatology, gynaecology, gynaecology oncology and genito-urinany conferences.
  • The Association is not funded and relies on donations. There are no offices, overheads or staff wages. The Management Team are all volunteers. Donations fund the website costs, administration costs and attendances at conferences to ensure up to date information.

2013 saw the formation of a Management Team consisting of our Funds Manager, Mr Colin Blinkhorn and Martin Levermore MBE.

HISTORY

Fabia has been living with LS since 1994.  Her Dermatologist suggested starting a group.  At that time, there was no information about LS in any medical book and nothing at all on the internet.  It was suggested that  a book be written but Fabia felt she  lacked the skill.  She wrote to well- known public figure and feminist author, Germaine Greer, to ask her for help in writing a book.  Germaine Greer kindly wrote  and suggested a website would be more helpful and easier to publish than a book.  The first website in the world for LS was born in 1997.  The Association has been renamed in the past to update for current times and is now simply Association for Lichen Sclerosus. The Association has a strong policy on Equality and is promoting the #menaswell project to highlight the suffering related to male lichen sclerosus.   Fabia has supported patient contacts around the world since 1994 and also works with those who have VIN, vulval cancer and any vulva condition that does not have a specific support network.

In 2000, she was made an honorary member of the British Society for the Study of Vulval Disease.  Served for 4 years on the committee of the BSSVD as the patient representative.  

Her work has  inspired many other nations to start a national charity. Italy, Nederlands, Germany, Switzerland, to name a few, have all followed her lead. 

Achievements include:

One of the authors of the Cochran Review published in 2012 and more recently, in 2013, the Standards of Care for Vulval Disease.

Founding the  Vulval Health Awareness Campaign.  VHAC is dedicated to education and advocacy for vulval disease and promotes vulval self examination.

Being  interviewed on UK BBC Radio 4, Women’s Hour.
Sharing her personal journey of living with LS in UK women’s magazines.

Being  filmed by UK Channel 4 TV for their Embarrassing Bodies series.  Performing vulval self examination to an estimated viewing audience of over 40 million, resulting in many women receiving a diagnosis.

Having her vulva sculpted by artist Jamie McCartney for the Great Wall of Vagina Sculpture.

Featuring in an ongoing video for the awareness initiative for ‘Check your Vulva’ with Channel 4 TV.

Attending International and European vulva related conferences, including ISSVD Alaska in 2007. 

Taking part in the committee of the UK Cancer Research vulva cancer group.

Formerly Trustee for the Vulval Pain Society and being in attendance at many of their one day workshops throughout the UK and continuing to attend when possible.

Regularly attending the special patient support group meetings for skin issues at the British Association of Dermatologists in London.

CONFERENCES AND AWARENESS EVENTS

In April 2013,  attending at the Alliance for Pelvic Pain conference in Bethlehem, PA, USA.

In July 2013, hosting an education stand for LS and vulva conditions at the British Association of Dermatologists Annual Meeting in Liverpool UK.

In September 2013 undertook a USA tour to meet with doctors who have an interest in vulvar disease. Interviewed on USA TV, Fox4 News with Dr Danielle Staecker, Kansas University Medical School.

October 2013 will be hosting an educational exhibition stand at the Royal College of General Practitioners Annual Conference in Harrogate.

October 2013 delegate at the Royal College of Obstetrics and Gynaecology Women’s Health Seminar, in London

October 2013 will attend the Annual Meeting of the Nederlands Lichen Sclerosus Group

February 2014 – promoting Vulvuary, the awareness month for vulval disorders

March 2014 will be attending the AGM of the British Society for the Study of Vulval Disease

July 2014 – exhibiting an education stand at the British Dermatology Nurses Group

October 2014 – exhibiting at the Royal College of General Practitioners in Liverpool

2015 – International vulva conference NYC

2016 – Conference of ECDVS in Italy

2018 – Conference of ECDVS in Copenhagen

2018 – Conference of IAAGSW in London (Aesthetic Gynaecology)

2019 – The Oxford Symposium – Advances in new technology and research

2020 – Lay member of the British Association of Sexual Health and HIV – Genital Dermatology subgroup. Speaking on behalf of male lichen sclerosus at their conference.
2020 – Organising, designing and promoting the WORLD LICHEN SCLEROSUS DAY JANUARY 17.
2020 – Organising, designing and promoting the #menaswell project. Specifically aimed at equality for male lichen sclerosus.

Website Statistics: This site receives around 75,000 visitors a month.  70% of visitors are from the USA.

Fabia lives in East Sussex, England, UK.

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