The founder of NLSSG is Fabia Brackenbury, who has had lichen sclerosus since 1994. It took Fabia two years to get a correct diagnosis for the condition and during this time, her marriage of 30 years failed. Fabia was encouraged by her consultant, a leading researcher in lichen sclerosus, to form the support group and her consultant introduced her to Dr David Nunns of the Vulval Pain Society. Dr Nunns forwarded his enquires from women with lichen sclerosus to Fabia and she gradually started the National Lichen Sclerosus Support group in 1997.
In 2000 the British Society for the Study of Vulval Disease awarded Fabia an Honorary Membership of the Society (and also Dr Nunns). The BSSVD supports Fabia's work for lichen sclerosus and she is currently a committee member of the BSSVD.
It soon became clear to Fabia that there was an urgent need for women with other vulval conditions to be able to obtain support and information. Bearing in mind that there are around 100 conditions that can affect the vulva, Fabia realised that it may not be possible to have individual support for all those conditions, some are very rare. Around 1998 Fabia had the idea of starting a charity to raise awareness and in 2000 the Vulval Health Awareness Campaign was launched together with a health awareness month in March each year. Soon after the Vulval Helpline was started. The helpline is unique in the world and is run solely by Fabia.
Fabia has been interviewed on BBC Radio 4 Women's Hour (together with Dr Nunns), told her story in 8 major women's magazines and has appeared in Channel 4 TV's Embarrassing Bodies programme. She regularly gives talks to medical and patient groups and attends at many vulval conferences throughout each year. She has advised on patient information leaflets for Patient.co.uk and patient guidelines of vulval health issues.
Now aged 62, she lives and works from Devon in the UK.
|
