23.11.2005
Researchers from the University of Brighton will be launching the Living Stories website www.livingstories.org.uk on Wednesday 23rd November at Brighton Jubilee Library. The website is the result of a life history collection of 30 people with haemophilia, diagnosed with HIV in 1985.
The haemophilia and HIV life history project was led by Sian Edwards, a senior lecturer in the Institute of Nursing and Midwifery at the university and was financially supported by the Heritage Lottery Fund. Sian has recorded and transcribed in-depth interviews with 30 people with haemophilia who as adults and children were infected with HIV in the early 1980s as a result of treatment contamination.
The stories look at how adults and children live with chronic, stigmatising health conditions and provides an opportunity to consider narrative history as a research method. The complete interviews and transcripts can be accessed at the British Library Sound Archive. For easier public access the website has been created using audio extracts from the interviews to follow the stories of individuals and explore the themes that emerged.
This year marks 20 years since over 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 only a few years to live, and since that date over 800 of those infected have died. Since 1997 and the advent of 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 said: "The life stories of these people, which relate to this dramatic social-medical event in the history of HIV in the UK, are fascinating and tragic. The website 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."
An exhibition about the project will take place in the Jubilee library from 24 November - 7 December.
Contact: Marketing and Communications, University of Brighton,
01273 643022
