News Details

Sickle Cell Day as Perceived by Sickle Cell Hope Alive Foundation – 19 June 2012


June 19 of every year was declared by the World Health Organisation as the World Sickle Cell Day in 2009. Sickle Cell Hope Alive Foundation (SCHAF), a non-governmental organisation, joined the world in marking this special day. The organisation recently organised a symposium to mark the day.

The Foundation is a registered, voluntary and non-profit organisation (NGO) that is dedicated to increasing Awareness and Education for Informed Decision; bringing hope, creating happy memories and improving the quality of life for individuals who experience life-altering situations caused by sickle cell disease. The theme of the symposium was “The Burden of Sickle Cell Disease – a Public Health Approach”

The vision of the Foundation is to enhance the care and capacity building of people living with sickle cell disease and educate the public through several key programmes on sickle cell disease. And in doing this, it enhances awareness and education programmes to young people for making informed choices later in life about marriage and childbearing and to couples at risk, introduces guidelines for healthy living for those affected by sickle cell anaemia and improving the understanding of care-givers and the public in the management and control of SCD in Nigeria.

“The provision of relevant medication even in a subsidised form will go a long way in assisting those affected live a healthier and more meaningful life. They will also be able to spend such money gained to pursue their education or profitable ventures,” Adeyinka Falusi, SCHAF President stated, stating that research particularly on ameliorators of SCD should be pursued.

According to Falusi, “There should be establishment of a Neonatal Screening facility with consequent intervention packages, conducting relevant research into the ameliorators of SCD, generation of basic database for the affected, facilitating ‘Training of Trainers (T-o-T) workshops for primary health workers in local government areas and production of handbooks for healthy living for SCD patients.

“SCHAF seeks to ensure active government involvement in the care of sickle cell disease in Nigeria. This becomes imperative considering the global statistics which present Nigeria as the nation with the highest rate and worst type of SCD worldwide.

What to know about SCD

• Sickle cell disorder is in the family of inherited diseases of the blood that includes sickle cell anemia and sickle cell hemoglobin C disease.

•  Sickle cell anemia is the most common form of sickle cell disease and the most problematic. It affects people irrespective of religion, social class or profession.

• The only route for contacting sickle cell disease is by inheritance from both parents.

• It is a life-long disease which as of date has no cure. However, treatment is available for the management of the complications of the disease.

• Over four million Nigerians suffer from the disease.

• Nigeria has the highest incidence and most severe type of the disease in the world.

• Over 150,000 children are bom with sickle cell disease annually (WHO 2006) with about 100,000 deaths each year from Sickle Cell Disorder.

• Over 40 million Nigerians also carry the sickle cell trait which is transmissible to their offspring.

• Due to improved treatments and care, people who have sickle cell disease are now living into their forties or fifties, and even longer.

– News captured From SCHAF by KEMI AJUMOBI