John's story
In 2022, after six long years of suffering, John, 52, from Birmingham, was diagnosed with a rare type of lymphoma called Sezary syndrome.
The harsh reality for John is that his only chance of survival is now a stem cell transplant from an unrelated donor.
John is of Jamaican heritage. Patients from ethnic minority backgrounds only have a 37% chance of finding a matching donor on the stem cell register, compared to 72% for those from white European backgrounds.
There’s currently no match on the register for John.
Vague symptoms then finally diagnosis
John's wife Jenny explains, “After returning home from working in Alabama USA John began to feel poorly and had a large lump on his neck. We thought it was an insect bite. When it didn’t respond to creams he made an appointment with his GP and was given antibiotics. It stayed the same so he was referred to ENT and for blood tests. His white blood cell count came back high but again it was put down to infection. As it happened in Alabama he was tested for Lyme disease but the tests all came back negative.
“Over the following months he developed strange vague symptoms. His skin started to itch and peel off. The skin on his scalp cracked and bled. He was in constant agony. Repeated trips to our local hospital followed, we paid to see private consultants and travelled the country to see experts; they all said it was eczema. He developed a rash that looked like blood cancer, the eczema creams weren’t working and his white blood cell count was still high. We tried to get doctors to believe us that it was leukaemia but no one would listen.
“After six years of suffering he changed GPs; she recognised straight away that it was blood cancer. Things moved quickly after that. He was referred to Haematology at Birmingham’s Queen Elizabeth Hospital where Sezary syndrome was diagnosed. They started him on ECP (extracorporeal photopheresis) treatment which failed. Chemotherapy followed and also failed. He is now on the last option, immunotherapy. This is not a cure."
Searching for a donor
“We are in limbo, waiting and praying for a donor. There are no related donors, so we are having to rely on the kindness of strangers.
“Please, please join the register, you could be a lifesaver.”
How you can help
Every 14 minutes, someone in the UK is diagnosed with a blood cancer or disorder. You could be their lifesaver if you’re aged 17-55 and in generally good health.
Please sign up to be a stem cell donor. Not just for John but for millions around the world suffering from blood diseases, cancers and immunodeficiency who need transplants.
You could be someone’s second chance at life. Please join the stem cell register today, to ensure all patients have an equal chance of finding their lifesaving match.