During a trip to the US in 2016, John O’Connor’s face became swollen and he initially thought he had been bitten. “The side of my neck where the lymph nodes are were basically like a golf ball,” he said.
When he returned to the UK, the condition of his skin began to deteriorate, leading O’Connor to be misdiagnosed as having eczema and psoriasis. It was only after seven years of sustained efforts to try to find out what was happening, suspecting that it could be leukaemia, that he and his wife were able to find some answers.
“We were really pushing for the [diagnosis],” said O’Connor, 53. “Literally every month, every day, we were going to hospital because the skin condition was really bad. And we kept pushing and we kept on saying, ‘Is it leukaemia?’, and they just kept fobbing us off, saying it was eczema and psoriasis.”
In May 2022, O’Connor was diagnosed with Sezary syndrome, a type of blood cancer. The diagnosis came as a relief. “I know it sounds bad, but it felt like closure,” O’Connor said. “When we were at the hospital and I got diagnosed, it felt like closure, because now we knew what it was. I thought, ‘Yes, it’s stage 4 cancer, but now we can do something about it.’”
With Sezary syndrome, the only treatment that fully eliminates the cancer is a stem cell transplant. O’Connor didn’t think finding a match would be a big barrier as he has an identical twin who was willing to be a donor. But because their cells were too genetically similar, he was told that his twin would not be suitable.
Stem cell (also known as bone marrow) transplants are critical in treating blood cancers. Unrelated donor matches are more likely to be found in donors from the same ethnic background.
According to the blood cancer charity Anthony Nolan, people from a minority ethnic background in the UK have only a 37% chance of finding a well-matched unrelated donor, compared with white people’s 72% chance.
This is partly due to a lack of donors from minority ethnic backgrounds. According to the charity Swab the World, people of colour make up 88% of the world’s population, while 70% of registered donors are from a white background.
O’Connor, who has Jamaican heritage, said that on learning that he had a lower chance of finding a match due to his ethnicity, he “couldn’t quite believe it”. He said: “We were absolutely devastated, and we were told by the consultant that for Black African and Caribbean people there is a quite limited [number of] donors on the register.”
In June, a hospital consultant told O’Connor and his family that after the first unsuccessful search for a match on the register, they wouldn’t look again for at least two years as it was unlikely that anyone suitable would have joined. O’Connor was also told that he had three months to live.
Since then, O’Connor says, he has had no contact from the consultant. “We were annoyed and upset,” he said. “He told us basically to go away. Even now, I’m getting nothing from the haematology consultants.”
Despite this, O’Connor feels hopeful, and he has helped to organise stem cell donor drives in Wolverhampton in conjunction with the charity DKMS and the African Caribbean Leukaemia Trust. “I’m optimistic. I have my good days and bad days,” he said.
