Sickle Cell - visibility

This is a project overseen by John Dada and run by Fantsuam Foundation.

The aim is to raise the awareness of this disease both locally and internationally.

To screen 6000 children in the Kafanchan area of Nigeria. (Nearly completed)

To provide psychological and medical support for the sufferers and their families.

To establish a sickle cell centre at Fantsuam . (Building of Laboratory well underway Dec 2010 also please see blog)

To provide basic genetic counselling for the local population.

Background to the Project

Nigeria has the highest occurance of sickle cell disease in the world.

John Dada became involved in Pilot Sickle Cell Cohort study This project aims to improve survival and quality of life for children with Sickle Cell Disease (SCD) by instituting early infant diagnosis and establishing standardised care that is sustainable through capacity building of service provision in a comprehensive manner from laboratory diagnosis, prevention, treatment and rehabilitation.

Project Outcomes

John Dada organised the only Sickle Cell UN Awareness day in Nigeria 1,300 people attended and 563 children were screened on this day.

By August 2010,  2,500 children had been screened for sickle cell. The aim is to reach 6000 but this was temporarily halted in the beginning of August as the laboratory at Abuja was unable to keep up. Sceening has now restarted. (January 2011 the exact figure to be confirmed but now nearer 5000)

Monthly Sickle Cell Support Group held at Fantsuam Foundation for 150 people and numbers are still growing.

John shared his concern about the need to tackle sickle cell in the Kafanchan area (and indeed in Nigeria as a whole) at the end of 2009. Consequently, 'Sickle Cell' was a regularly topic on the agenda of the weekly online UK-Nigeria meetings.

Nikki Fishman, Dadamac UK Manager (see blogs) a former paediatric nurse, was keen to help John, as she also realised the importance of tackling this disease in the developing world.

Dadamac provided a powerpoint presentation of information to be used by Fantsuam Clinic staff, their patients and their families.

Dadamac used its online presence to raise awareness of this issue and helped with press releases to publicise the UN Sickle Cell awareness Day.

In 2010 Dadamac, in collaboration with Dick Heller and the peoples-Uni, provided volunteers to look at providing suitable traning resources for those caring for sickle cell patients in a resource challenged environment.

Dadamac is helping it to be more visibile.