Important note: Information in this article was accurate in 2003. The state of the art may have changed since the publication date.
BBC News - Tuesday, 2 December, 2003
Clare Babbidge, BBC News Online
He is among over 1,200 British haemophiliacs given HIV-infected blood products in the 1980s - some of the early and unexpected victims of the global Aids epidemic.
Fewer than 400 of them are still alive.
Robert, 37, was 18 months old when he was diagnosed with haemophilia. His parents had been unaware the genetic condition was in their family. "I'm a mutant," he jokes.
Throughout his childhood and teens he was injected three times a week with the blood product Factor 8 to make his blood clot properly.
The risk of HIV infection through donated blood was recognised in 1983, following the deaths of haemophiliacs in the US.
There have since been many calls for a public inquiry into how infected blood came to be used. All donated products in Britain have been tested since 1985 - but this came too late for Robert.
'Out of the blue'
At 18, he was studying for his A-levels, hoping to go to university and to "enjoy lots of drinking and meeting women".
His HIV diagnosis came "out of the blue" following a routine check.
"Although I knew I'd probably been given American products at some point, for the previous two years I'd been given British ones. I just didn't think it would be me," he says.
"I think I was in shock. I ended up just going back home and throwing myself into revising for my A-levels. My way to avoid it was to study - I don't think I'd have passed applied maths otherwise," he said.
Robert went on to study psychology at Swansea University.
He found out about the Birchgrove Group, a patient support group, and was invited on a free weekend away where he met other haemophiliacs with HIV for the first time.
"I could talk openly about everything to people who really understood," he said.
The group was set up around 16 years ago by a small number of haemophiliacs in Cardiff who had been infected with HIV. They named themselves after the pub where they first started meeting - The Birchgrove.
Robert explains how the original members found solace and support at a time when HIV was described by some as the "gay plague" and leaflets saying "don't die of ignorance" were sent to every UK household.
He is now the group's chairman.
Dark days
In 1997 one of the early members of the group, and a friend to many, died from Aids-related illnesses. This marked the end of an era for Birchgrove.
Robert says it also seemed to mark the start of some very dark days when he knew at least 10 people a year who died from Aids, around half of them haemophiliacs.
But in the last few years, hope has been given to many of the survivors with the provision of antiretroviral drugs. Robert was prescribed them in 1996.
"I'm really sure I would not be here without them," he says.
"One of my main regrets is all the friends I have seen die," he says.
"Another is that it has made it so much harder to find a partner - it kind of puts people off when you say you're HIV-positive."
But he adds that many of the men in the Birchgrove Group have gone on to get married and have children.
"The diagnosis has made me do all the things I wanted to do, just in case I got sick and died," he recalls.
Living memorial
Robert, who lives in Brighton, now works on several projects, such as helping collate the life stories of haemophiliacs with HIV for the British Library.
The Birchgrove Group continues to offer support. Its quarterly magazine is read by people around Britain, including the widows of some of those who have died.
The group recently funded the planting of a grove of 1,200 trees at Stratton Wood, Wiltshire, as a memorial to haemophiliacs infected by HIV.
Robert says this is a memorial to those who have died and a celebration of those still living. "It makes me happy that it is a living monument, and will still be there long after we are all gone.
"I think it is too easy to forget us. I just want people to know that a lot of us are still around".
031202
BB031208
Copyright © 2003 - BBC. Reproduction of this article (other than one copy for personal reference) must be cleared through the BBC.
AEGiS is a 501(c)3, not-for-profit, tax-exempt, educational corporation. AEGiS is made possible through unrestricted funding from Boehringer Ingelheim, Bridgestone/Firestone Charitable Trust, Elton John AIDS Foundation UK, the National Library of Medicine, AIDS Walk of Orange County, and donations from users like you.
Always watch for outdated information. This article first appeared in 2003. This material is designed to support, not replace, the relationship that exists between you and your doctor.
AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.
Copyright ©1980, 2003. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content.
.