Newcastle MP Dame Chi Onwurah has spoken out about the impact of sickle cell disease, describing it as a "horrendous" illness that causes debilitating pain. The inherited blood condition affects red blood cells, altering their shape and reducing the amount of blood and oxygen transported around the body.
On World Sickle Cell Day, June 19, Dame Chi attended a special awareness event at Newcastle's Royal Victoria Infirmary (RVI). Consultant Dr Rachel Evans, specialist midwife Kerry Raper, and nurse specialist Jenni Lawrence were also present to highlight the condition, which they said is affecting a growing number of people in the North East, with hundreds of patients seen at the specialist clinic.
Sickle cell disease predominantly affects people of African descent, and changing demographics are leading to more cases in the North East. For a child to inherit the condition, both parents must carry the gene. The NHS team emphasized the importance of screening, now offered during pregnancy.
Dame Chi, who has previously advocated for research to address health inequalities in Newcastle, said: "Today is World Sickle Cell Day. Sickle cell is a horrendous disease that particularly affects those of African descent. But it remains a little-known condition and one that can cause huge amounts of pain. That's why I am so pleased that the RVI has put in place today's event so people know they can access the support available here. It's also about reducing the stigma around sickle cell."
She added: "It's an inherited disease, it's never anybody's fault, and there is support and treatment there. I have known about sickle cell for a long time, but to be honest, I had never quite appreciated how it works: It affects the very cells in our blood."
Dame Chi recalled learning about the condition in her youth through her admiration for the band Rip Rig & Panic, whose bassist Sean Oliver had sickle cell disease and died from sickle cell anaemia in 1990. "That's how I became aware of this, and it's great that now in Newcastle there's this support and information available so that as many people as possible become aware of what it is."
At the RVI, experts explained that in the most severe cases, stem cell transplants and gene therapy can now potentially cure the condition. Kerry Raper, specialist midwife for haemoglobinopathies, said: "World Sickle Cell Day is an opportunity for us to talk about sickle cell disease, what it means to be a genetic carrier, and what the future may look like when a baby receives a new diagnosis of the condition."
She added: "At Newcastle Hospitals, our multidisciplinary team supports children and adults from across the region, providing specialist care and management throughout their lives. All pregnant people booking for maternity care in Newcastle are offered screening for haemoglobinopathies, including sickle cell disease, and all newborn babies are screened shortly after birth through the heel prick test. Genetic counselling is also available through our specialist midwives."
Jenni Lawrence noted: "Prevalence of sickle cell is increasing in the North East. Despite this, it continues to be under-recognised, leaving children and young people feeling isolated and misunderstood. We need to raise awareness to beat the stigma associated with the condition and for children and young people to enter adulthood feeling confident, educated and empowered. We also need to advocate for more funding and research into sickle cell to provide more treatment options in the future."
Mel Hall, a nurse specialist working with adults, agreed, stating that sickle cell is one of the "most common" inherited blood disorders but "remains significantly underfunded and misunderstood." She added: "Raising awareness is critical because it directly impacts patient survival and quality of life. We want people with sickle cell disease to feel empowered to access the specialised care and treatment they need and deserve, enabling them to embrace and accept their condition so they can go on to lead healthy, happy lives."
