Sickle cell and laudable interventions
Punch – Tola Dehinde 6th Nov 2021
A few months ago, a friend sent me an invitation to the launch of a foundation dedicated to sickle cell. I do get a lot of such invites, especially as we are in the Zoom era. Sometimes, these events and meetings can be too much. However, I attended this particular online event. It was attended by a lot of doctors even though, there were speakers from all over the world. It was a well-presented and a short launch. I got in touch with the speakers after the event. Long story short, I asked one of the co-founders, Jide Adetunji, to write about how the foundation, Amoke Foundation, came about.
We hear about people living with sickle cell dying year in year out. As the news of another death filters to the sickle cell community, those in the advocacy and awareness world of sickle cell feel that they are barely scratching the surface. AF wants to tackle the issues of sickle cell by empowering Haemotology doctors, so that patients get the best care possible. It is interesting that till now, a lot of people still misunderstand what sickle cell is. Let’s educate ourselves further:
Sickle cell disease
Sickle cell disease is an inherited disease that affects the production of haemoglobin, a protein in red blood cells that carries oxygen throughout the body. An inherited mutation causes people with SCD to not have normal, healthy adult haemoglobin in their red blood cells and instead have abnormal haemoglobin called sickle haemoglobin. The result is rigid, crescent-shaped, or “sickled” red blood cells that can clump together in blood vessels and block the flow of blood throughout the body. Consequently, SCD can cause frequent episodes of severe pain, weakness, and other serious complications.
Our inspiration in wanting to start a charity was Dr Oluyemisi Adetunji-Badejo (aka Amoke), (pronunciation – aa-MowKEH). Adetunji-Badejo, a wife and daughter, despite living with the chronic debilitating condition, dedicated her life to her patients, profession, family, and friendships. Amoke, a pet name given to her by her father, led by example, shared her joy, spoke with conviction and her calm nature and strong character brought out the best in every person she encountered.
Born in April 1966, Oluyemisi was the third child of four and the only daughter of Oyelami and Modupe Adetunji. SCD had already been identified in the family as her immediate older brother was also diagnosed with the disorder.
Oluyemisi excelled academically at the top percentile of her class from early kindergarten right through medical school and postgraduate education. In 1974 she was diagnosed with early signs of scoliosis (curvature of the spine), an implication of SCD on the musculoskeletal system. To prevent further damage to the spine, she was fitted with a spinal brace (lumber jacket) for about six months. During this period, she was unable to attend school, however her performance was not adversely affected in the year end examinations – she passed with flying colours and the early medical intervention was also a resounding success.
She completed medical school at the University College Hospital, Ibadan, Oyo State, in 1987 at 21 and migrated to the United Kingdom where she did paediatric internship and residency. She moved to the USA and successfully completed a master’s degree in public health at the University of North Carolina at Chapel Hill NC and residencies in paediatrics and public health at the University of North Carolina Teaching Hospitals.
Oluyemisi met Ibraheem Badejo, a scientist while studying at UNC; they got married in May 1997 and are blessed with a son, Oluwadara. Amoke was a founding partner at Wake Forest Paediatric Associates PLLC in Raleigh North Carolina. She was a member of the Royal Colleges of Physicians of the United Kingdom and Fellow, American Academy of Paediatrics.
On the 10th anniversary of her passing due to complications of the disorder, her widower, and brothers co-founded Amoke Foundation – a humanitarian aid organisation dedicated to improving the quality of life of people suffering from sickle cell disease worldwide with a focus on medically underserved communities in sub-Saharan Africa.
The foundation’s strategy and focus will be on sickle cell disease and aimed at providing patient-centred programmes for medically underserved communities by working in partnership with teaching hospitals to facilitate clinical trials of new drugs and implement new treatment protocols to alleviate the sufferings of SCD patients in these areas.
As a licenced charity in the UK and Nigeria, AF set out to collaborate with the foremost teaching hospital in Africa, the University College Hospital, Ibadan to establish its first Pain Management hub. The initial focus is Nigeria, but with the aim of expanding to other sub-Saharan African regions.
The foundation’s future plans will be to partner with manufacturers of medical devices especially in the blood analysis and diagnostics arena to facilitate new-born screening exercises and lower the cost of blood tests for patients attending the PMH on a regular basis.
Other preventative areas AF will concentrate on will be: Pneumococcal vaccinations, antibiotic prophylaxis and transcranial doppler screening.
AF will be involved in advocacy and policy reform for SCD – by engaging with the government and the private sector, for instance, in medical insurance and employment policy. Training and educational scholarships and grants will be made available to young ‘Amokelians’ willing to pursue a career in haematology medicine or blood technology.
If you would like to get in touch with me about this article or about sickle cell, do so, via email: [email protected] and do visit my blog: www.howtolivewithsicklecell.co.uk. The e-copy of my book on sickle cell – How To Live With Sickle Cell is available for purchase on www.toladehinde.com and if you want to purchase a paperback version, it is available on Amazon.