Treatment that changes the lives of sickle cell patients

Nadine White and Thomas Kingsley hear how those with the disease have been given fresh hope by a groundbreaking drug

- Nadine White and Thomas Kingsley

Gloria Ademolu would wake every morning in pain. The 26-year-old would need five prescription painkillers a day to cope with the agony caused by sickle cell disease. The engineering student is one of about 15,000 people in England with the genetic, lifelong condition, in which red blood cells are shaped like a crescent or sickle) rather than a disc.

As well as episodes of extreme pain, Gloria, from Manchester, would need to receive eight bags of blood every six weeks during red blood cell exchange procedures that left her exhausted. The disease, which mainly affects people of Black, Asian and ethnic minority heritage, can damage organs and cause intense pain, as well as anaemia because the blood cells cannot carry oxygen effectively around the body, leaving sufferers with tiredness and shortness of breath.

But six months ago, Gloria’s life changed. She began taking Crizanlizumab, a treatment the NHS has given to 180 patients and counting after a deal to make it the first new drug for sickle cell in 20 years. A study suggests it can reduce A&E visits by 40 per cent.

“I hated getting exchanges because it was so painful,” Gloria says. The last time I was like, Enough, I’m done now. I told my doctor, The treatment you said is approved: let’s just start’ That’s what pushed me, I didn’t want to be in pain.” There were times when Gloria said treatment options and awareness of sickle cell were so low, that she had to tell doctors in A&E how to treat her and share pain-relieving gas and air with other sickle cell patients.