Fabia Brackenbury, Founder, Association for Lichen Sclerosus and Vulval Health, web manager, education/information co-ordinator, patient advocate, author and broadcaster.
Visitors ask who runs the site and where does the information come from. This is a fair question. There are now any amount of people giving information on the internet about lichen sclerosus. The aim is to offer responsible and medically sourced information, arising from association with many international doctors, the BSSVD and ISSVD, the BAD and various other dermatology, gynaecology, gynaecology oncology and genito-urinany organizations.
Nobody at the Association gets paid for the work undertaken. Fabia and the Management Team give their time absolutely free. There are no executives on high salaries. There is no actual office with rents or overheads. Donations are used to keep the website running and to fund projects to further education and knowledge of LS. For example, the Management Team believe in the importance of attending medical conferences to keep up to date with information and to keep lichen sclerosus in the focus of the medical professionals. Awareness is now ‘big business’ amongst other charities and non-profits, if we want better information and help, we need to maintain a presence where doctors can see us and learn about our needs. Fees for patient organizations to attend medical conferences, despite their charitable nature, are very high. The prestigious British Medical Journal charge over £5000 for a non-profit stand at their annual conference. Attendance at the General Practitioner’s Conference are around £2000 for a patient stand. Please think about donating to help with the work.
2013 saw the formation of a Management Team consisting of our Funds Manager, Mr Colin Blinkhorn and Martin Levermore MBE. Martin is our Project and Business Director and was awarded the MBE by His Royal Highness, Prince Charles, at Buckingham Palace, England, UK at the beginning of 2014, for his services to the community he works in.
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 group was once known as National Lichen Sclerosus Support Group. Fabia has supported patient contacts around the world since 1997 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. For four years, she served on the committee of the BSSVD as the patient representative. She has attended every meeting of the BSSVD since 2000. Meetings always include presentations by doctors who have an interest in studying vulval disease. LS. lichen planus, VIN and vulva cancer and the more rare vulval diseases are discussed. She has been privileged to hear some of the most eminent doctors who study vulva disease and to meet with them.
Her work has inspired the Nederlands and Italy to form their own national societies. In 2012, a close alliance with the Italian support group was made and regular contact with Italy is maintained. Her work is accepted and recognised by medical professionals all over the World.
Other 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.
Sharing her personal journey of living with LS in 7 popular UK women’s magazines.
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.
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. (The ISSVD no longer allow patients to attend meetings.)
Taking part in the committee of the UK Cancer Research vulva cancer group.
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 will undertake a USA tour to meet with doctors who have an interest in vulvar disease.
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
Website Statistics: This site receives around 8000 visitors a month. 70% of visitors are from the USA.
Fabia lives in East Sussex, England, UK.