'I live in fear of dying' - Leeds mum of triplets shares experience of life with sickle cell disease

In England, there are around 17,000 people living with sickle cell disease, an inherited blood disorder, with 250 new cases each year. It is generally more common in people of Black African, Caribbean, Middle Eastern and South Asian heritage.

Solome, who came to the UK from Uganda, says: “I worry constantly about organ failure or having a stroke. I’m scared of dying, especially because I never want to leave my triplets when they’re still so young.

"My mum died before I had the chance to know her. She never really got to experience motherhood – in that respect, I feel lucky.”

Patients with sickle cell disease are now set to benefit from quicker and more accessible treatment. The government recently announced a plan, backed by a £9 million investment from NHS England, to transform a specialised set of treatments which remove harmful components from a patient’s blood.

The funding will be used to develop more specialist treatment centres, as well as expanding access to cutting-edge technologies, which perform automated cell exchanges, removing a patient’s sickled red blood cells and replacing them with healthy donor cells.

Health Innovation Yorkshire & Humber, one of 15 organisations set up to operate as the key innovation arm of the NHS, has already been working to deliver new automated blood exchange devices where they are most needed, enhancing patient care and reducing the distances people need to travel to receive treatment.

It says the new funding will support wider access to such specialist treatments, improve the availability of out-of-hours care and grow the workforce needed to manage the advanced technology.

Solome says: “I was born with sickle cell. It was confirmed when I was four years old, after numerous crises as a baby.

“When I came to England in 2004, I understood the severity of my illness and received far better care than I had in Uganda. Access to better treatments has helped me to become someone I never thought I could be. I’ve always been lonely and depressed because of the illness.

“Now I’m a wife, a proud mummy to triplets, a good friend to many, a student, and someone who catches moments of happiness. I’ll never stop thanking the NHS, my haematology team, blood donors, and everyone who makes safe blood available for me.”