After more than four decades living with sickle cell disease, Agbota Okojie, has become the first patient in Brighton – and one of only a few in the UK – to be cured following a pioneering stem cell transplant performed by the Royal Sussex County Hospital team.
Sickle cell disease is a serious, inherited blood disorder that is most common in people of African or Caribbean heritage. It causes unusually shaped red blood cells that do not live as long as healthy blood cells and can block blood vessels. This causes excruciating pain, organ damage and a shortened life expectancy.
Diagnosed at the age of two, Agbota, 45, suffered years of pain and illness and sadly lost three of his sisters to the disease.
The father of one explains: “Living with sickle cell meant enduring countless hospital admissions, unpredictable health crises, and emotional isolation. Beyond the physical pain, what often hurt more was the discrimination I faced. These experiences leave scars that are not always visible.”
Stem cell or bone marrow transplants are currently the only cure for sickle cell disease, though they are rarely performed due to the significant risks involved and requirement of a matched donor. For Agbota, that match came from one of his sisters.
Following extensive testing, Agbota became eligible for the transplant, which was performed through a collaborative effort between the Royal Sussex County Hospital – his place of work – and King’s College Hospital in London where the procedure took place.
The intensive treatment involves chemotherapy and radiotherapy to clear the patient’s bone marrow, followed by a transplant of healthy stem cells from a genetically matched donor. These cells then produce normal red blood cells, effectively eliminating the disease.
Dr Tom Rider, Haematology Consultant, who led the procedure said: “This is a huge development, with no new successful treatments for sickle cell disease for several decades! I am pleased for Agbota and his family. This cure, and the recent approval of gene therapy for those without a matched sibling donor, marks a turning point in treatment options for this this devastating disease.”
To date, only 15 adult cases across the UK have undergone this type of treatment for sickle cell disease.
Now cured, Agbota is seizing his second chance of life. He said: “Being the first person in Brighton to be cured of sickle cell disorder is an overwhelming and deeply emotional milestone. After a lifetime of navigating pain, stigma, and systemic neglect, this moment signifies hope, healing, and a powerful reminder that change is possible.
“This treatment has not only transformed my health but also reshaped my future. I now live free from the constant shadow of crisis. I have a renewed sense of purpose and energy to advocate for others who continue to suffer in silence.”
As a dedicated sickle cell advocate, Agbota founded The Scarlet Smile, an initiative aimed at creating safe spaces for people living with the condition, raising awareness for curative treatment options, and advocating for systemic change.
He is also writing a book about his experience with sickle cell through illness, prejudice, perseverance, and recovery. He hopes it will serve as a “source of strength and knowledge for others on similar paths.”