Many Volunteers who are living with vulva conditions, work quietly in the background of life. They are not big internet stars with followings of thousands in secret groups but the work they do FACE TO FACE, away from cyberspace and in the outside, real world is powerful and very often overlooked. Internet groups are very popular and they do have a roll to play in support but there are some disturbing issues that can arise from membership and it is noticeable how may emails the Association receives recently from those who do not have internet access and would not enjoy a cyber experience.
This is a tribute to the London Vulval Pain Support Group. Founded in 1992 by Juliette and supported by Karen (Kay), this group meets several times a year in the crypt of a church in central London. Women are offered friendship, support, a place to feel less alone. Sharing, caring, hugs and information on coping, treatments and doctors are on the agenda. As well as vulval pain, there are some members who have lichen sclerosus and they are made very welcome.
Tributes now to Dunya Bellaby, living with lichen sclerosus for 35 years of her 40 years of life. Dunya started the first meeting, face to face, group in Cornwall, England and is still actively supporting those who contact her. Her group was taken over by the local hospital in Truro and is now under the guidance of a local doctor. Dunya is happy to hear from you but you need to live in Cornwall.
Included in the honours are Silvano Annibali, President of A.L.I.S.A in Italy. Making a brave contribution as a man living with lichen sclerosus. All credit is given to the many other countries who are now starting their own National support groups and networks.
VOLUNTEERS are special, precious people, who make a huge difference to the world they work in. Please remember them with kindness and respect, they often go where angels fear to tread.