08.06.2005
The haemophilia and HIV life history project which explores the experiences of 30 haemophiliacs infected with HIV over 20 years ago, will be presented by Sian Edwards, senior lecturer in the Institute of Nursing and Midwifery at the University of Brighton, on Thursday 9 June at Telscombe House, Falmer.
The year 2005 will mark 20 years since 1,200 people suffering with haemophilia, the blood condition in which essential clotting factors are either partly or completely missing, were infected with HIV in UK. When diagnosed in 1985 those with haemophilia and HIV were informed they had two years to live, and since that date over 800 of those infected have died, but since 1997 and the advent of a combination therapy for HIV, the 398 who are still alive are generally well and likely to now face a future which they never assumed they would have.
Sian Edwards, supported by the Heritage Lottery Fund and the British Library Sound Archive has recorded and transcribed in-depth interviews with 30 of those with haemophilia who as adults and children were infected with HIV in the early 1980s as a result of treatment contamination. The presentation will look at how adults and children live with chronic, stigmatising health conditions and provides an opportunity to consider narrative history as a research method. Edited extracts are being compiled to create a website so that their experiences can reach a more public audience.
Sian said: "The life stories of these sufferers, which relate to this dramatic social-medical event in the history of HIV in the UK, are fascinating and tragic. This material could be valuable in creating a teaching resource for health care workers. We have interviewed people infected at age six and up to the age of 50 and they have so much to tell us. This project can improve our understanding of how adults and children live with chronic, stigmatising health conditions."
To find out more contact Sian Edwards on 01273 644030.
Contact: Marketing and Communications, University of Brighton,
01273 643022
