Tito Oye is a London based Tenancy Manager and Sickle Cell patient advocate.
To raise awareness of this painful illness that predominantly affects those of African and Afro-Caribbean origin, Tito runs the blog Her Sickled Journey and is a columnist for Sickle Cell Disease News.
Sickle cell anaemia is an inherited disease that affects red blood cells with an abnormal version of haemoglobin, the protein that carries oxygen throughout the body. The altered haemoglobin is known as haemoglobin S, or sickle haemoglobin, because it causes normally oval-shaped red blood cells to assume a sickle shape.
Red blood cells with healthy haemoglobin have a disc-shaped structure. This makes them flexible, allowing them to carry oxygen throughout the bloodstream to organs and tissue.
Red blood cells with sickle haemoglobin become rigid, making it difficult for them to get through smaller blood vessels. This prevents or slows blood flow.
The result is oxygen being unable to reach places it’s supposed to, causing inflammation and episodes of sudden and severe pain, known as pain crises.
Another consequence of poor oxygen delivery is damage to major organs, including the brain, eyes, lungs, liver, heart, spleen, and kidneys.
Although there is no cure for sickle cell anaemia, treatments are available to relieve pain and prevent complications. One such treatment is a blood transfusion used to provide normal red blood cells to the patient’s body.
The success of the treatment is higher when the blood which is used is closely matched to the patient’s ethnicity, this is because of the rare blood type which is required. However, only 1% of blood donors are currently from an African-Caribbean background and the number of registrations and donors within ethnic minorities are considerably low.
Tito also serves as an ambassador for Melanin Medics’ Black Blood Appeal. Their annual project aims to widen awareness and aid in the strengthening of support within the black community to address this pressing issue.Tags: patient advocacy, rare diseases, Sickle Cell
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