13 March 2016
Nigeria has the highest number of people with sickle cell disorder (SCD) in the world. Meet the organisation that’s doing something about it.
Chances are, if you are not directly affected by SCD, you know someone who is. Over 40 million Nigerians are healthy carriers of the sickle cell gene (Hb AS) i.e. about 1 in 4 Nigerians. As a result, roughly 150,000 Nigerian babies are born every year with sickle cell anaemia (Hb SS) i.e. about 1 in 50 newborn babies.
It is by far the largest cluster of SCD anywhere in the world. Sadly, most of them would die before their 5th birthday, largely due to ignorance, improper diagnosis and care – or a combination of all these.
The statistics don’t have to be this grim. In United States of America, the average life-expectancy of people with sickle cell anaemia increased from 14 years in 1973, to 53 years in 2003 and higher still by 2015. Extensive research and care service programmes have primarily accounted for this. Over the last 40 years, 25 sickle cell centres have been established across America to specifically address the problems of the disorder.
There is some hope. Since 1994, the Sickle Cell Foundation Nigeria (SCFN) has worked valiantly to alleviate the burden of SCD in the country and ensure that affected people can ultimately live normal, pain-free lives. The SCFN developed the National Sickle Cell Centre, the first comprehensive centre of its kind in Africa. Significantly, all funds needed were raised in Nigeria. Located opposite the Lagos University Teaching Hospital (LUTH), the Centre facilitates a variety of diagnostic, counselling, clinical and capacity building services, as well as initiates some research programmes.
Since 2011, the SCFN has partnered with Istituto Mediterraneo Di Ematologia (IME), a not-for–profit NGO in Rome, Italy. The intention is to transfer to Nigeria, within 4 months, the requisite technology and skill for performing bone marrow transplantation (BMT) to cure SCD. Since then, 50 Nigerian children and adolescents with SCD have been fostered to IME in Rome for the BMT cure. BMT involves the destruction of the cells in the bone marrow of an affected person (the recipient) and replacing it with stem cells obtained from the bone marrow of a healthy and compatible individual (the donor).
Two doctors and two nurses from LUTH have been trained in Rome on the skills for BMT – also as a result of the partnership with IME. The SCFN are now raising funds needed to develop a specialised BMT Unit within LUTH – a first for Nigeria.
However, tackling the disorder should not be the sole responsibility of the SCFN. Willing individuals and corporate bodies can – and should – help.
How you can help
Spread the word. Let more people know about the work of SCFN:
Give me Five! You can support the SCFN by pledging to donate just N5,000 every month via bank direct debit towards their cause.
For further information please contact:
Sickle Cell Foundation Nigeria, National Sickle Cell Centre, Ishaga Road,
P O Box 3463, Surulere, Lagos.
Tel: 234 1 762 1522, 234 810 000 2003 (National Director),
234 810 000 2001 (Enquiries)