VHL in England

The VHL Contact Group of the United Kingdom held a Day Conference in Manchester in April 2005. The Meeting was chaired by Mary Weetman, Co-Ordinator for the Group.

The Meeting was attended by some forty six people comprising members, their families and carers together with professionals involved in this field of work. These had travelled to Manchester from all parts of the United Kingdom.

Mary drew attention to the Group's Website at www.vhlcg.co.uk which had been updated to include a 'voice over' facility to assist members who are visually impaired.

Joyce Graff spoke on "Hope, Strength, and Community." Joyce's strategy for coping with VHL may best be summarised thus: 'You manage VHL. Do not let VHL manage you'. She emphasised the importance of monitoring the progress of the condition and of seeking the appropriate treatment. She urged people not to be timid about asking for second opinions. She valued the importance of living with a half full glass approach to life; to be optimistic and, above all, to keep strong.

The second address was a paper delivered by Karin M., a VHL Contact Group member, and was entitled 'My Life with VHL'. In her paper Karin described her personal and family experiences in discovering the presence of the syndrome among relatives and, later, with herself. She recounted the experiences she had, both good and bad, at the hands of the medical profession and of the way she had come to terms with herself, her condition and how she copes. She emphasised that all who are affected by VHL, be they those concerned, or their families and friends, need to be strong and live alongside the condition rather than allow it to dominate their lives. This, she said, took time to achieve.

The final address was given by Professor Adrian Harris, Director of Cancer Research UK at the University of Oxford. His paper, 'New Approaches to Treatment for VHL' provided members with a clear scientific outline of the way in which the syndrome develops and of the scientific strategies which are being pursued in attempts to diminish or halt the onset of the condition. In the course of discussion the importance of funding for such projects emerged and of the value of volunteers prepared to participate in experiments.

Professor Harris' address well described the substantial research in the UK which is dedicated to work for VHL families. This all in need of funding, and participants for research purposes, backed up by a vocal lobby for the cause.

Tracey Fox-Stillwell raises funds for Dr. Maher's genetic research in Birmingham (see http://Tantaraswish.co.uk), but the VHL clinical research project in Oxford is not funded by these efforts.

As printed in the VHL Family Forum 13:2, August/September 2005. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.