The two women embraced as they met in the crowded hotel lobby, smiling and joking with just a touch of awkwardness.
Karen Brown and Gemma Coles could have been mistaken for any old friends seeing each other again after a long time apart.
But they were meeting for the first time. And until two years ago, they were strangers. Then Gemma contacted Karen, out of the blue, on Facebook, to offer her a kidney.
It was an astonishing act of altruism that would not only change both of their lives but would help change the landscape of organ donation in the UK.
Mother-of-two Karen, from East Grinstead, West Sussex, had been diagnosed with chronic kidney failure, and, struggling to find a donor because of the unique composition of her blood, had posted about her situation online.
In 2012, for two people who had met only via social-networking sites to help each other in this uniquely generous way was unprecedented. But now, thanks to Karen and Gemma, new published guidelines mean that anyone wishing to become a living donor can offer to give up a kidney or part of their liver to a complete stranger they have found via social networking.
Not only do the guidelines help to address the challenges faced by people like Karen who struggle to find a suitable donor among friends or family, but they also recognise the real opportunities presented by social networking which, until recently, simply did not exist.
Sadly, Gemma, 35, was not a suitable match for Karen, 42, who did undergo a successful transplant operation in April after receiving a kidney from an unknown altruistic donor on the organ register. But transplant chiefs say it is “only a matter of time” before the first British Facebook organ donation takes place.
Allan Marriott-Smith, of the Human Tissue Authority (HTA), said it began receiving questions about Facebook donations in 2010. It has now given enhanced training to 50 of its 150 independent assessors to allow them to work out, via detailed interviews with donors and potential recipients, whether people meeting via the internet are genuine.
“The legal requirements to living organ donation are the same regardless of how people meet,” he said. “The donor must not have been placed under duress or coercion, they must have given their consent in an informed way, and no reward should have taken place.
“It’s almost certain we will see a case of donation where people meet via social networking ... I think it is only a matter of time.”
Transplant nurse Lisa Burnapp, of the British Transplantation Society’s (BTS) standards committee, said: “I’m aware of around 20 cases in progress right now. Often these are the most complex to transplant, with limited options. They can be desperate, which is why they advertise on Facebook. The chances of finding a match via social networking are small, but it’s only a matter of time before one of these cases is successful. It’s important – this is a novel area. We are feeling our way, but we are also able to see the potential of [social networking].”
Karen, a digital production executive, was diagnosed with kidney failure in 2011 and, without a transplant, faced a lifetime of dialysis. Her husband, Matt, offered his own kidney, as did friends, an elderly aunt and even the couple’s window cleaner, but none was suitable.
Then, in June 2012, a message arrived from Gemma via Facebook.
Karen said: “Gemma wrote that she’d seen my story and was really touched by it; that she felt for my family and wanted to try to help .... She’d investigated kidney donation in the past but wanted to find someone she felt a connection with.”
Gemma, who lives near Wisbech, Cambridgeshire, with husband, David, and sons, Charlie and Oliver, had decided years before that she wanted to become a living donor, but had never found the right person. Becoming an altruistic donor, and potentially never meeting the recipient, did not appeal.
“It could have been a bit X Factor – who’s got the best sob story?” Emma said. “I encountered many heartfelt stories, knowing this person was someone’s much-loved parent, sibling or friend, but each time something was missing. Karen’s story resonated and our lives were very similar. I don’t believe in fate, but from that day forward I never doubted she was the recipient I was looking for.”
Gemma recognises the controversy of her decision and even Karen’s doctors rejected the idea. Karen said: “They said, ‘Definitely not. We don’t do that. You don’t know her, you’ve never met her. We don’t know there hasn’t been any coercion. We’d never get it past the ethics committee’.
“I was blown away. I knew Gemma was genuine; a lovely person wanting to help me and my family. I got quite cross. It felt as if I was fighting for my life.”
The pair wrote to the HTA, and doctors approached the BTS for further clarity. Many months and several committee meetings later, the BTS published its professional guidelines in April 2013. Overjoyed, the women were finally allowed to begin the initial stages of testing. But it was bad news. Gemma was not a match.
“We’d worked so hard and thought it was destiny,” Karen said. “Gemma was the only one who cared enough to help in the only way that was useful. So it was devastating to have to tell her it wasn’t going to happen.”
Fortunately, an altruistic donor – a stranger Karen will never meet – was later found to be a match, and she had a successful transplant at St George’s Hospital in south London.
Gemma has now begun a new search. “Once you know what a profound effect on someone’s life it has, you wonder why more people don’t do it,” Gemma said.
“You don’t need both kidneys.”Reuse content