Sickle cell disease (SCD) is one of the most common genetic diseases worldwide and its highest prevalence occurs in Middle East, Mediterranean regions, Southeast Asia, and sub-Saharan Africa especially Nigeria. It is an inherited blood disorder in which there are not enough healthy red blood cells to transport adequate oxygen throughout the body lead to various complications and frequent hospitalization.
Nigeria has the highest burden of Sickle Cell Disease (SCD) in the world and is also the top sickle cell endemic country in Africa. The prevalence of sickle cell trait ranges between 10 and 45% in various parts of sub-Saharan Africa, In Nigeria about 20 to 30% are carriers of the sickle cell gene. SCD affects about 2 to 3% of the Nigerian population of more than 160 million. Recent estimate from a large retrospective study by Nwogoh et al. in Benin City, South-South Nigeria revealed an SCD prevalence of 2.39% and a carrier rate of about 23%.
Lack of awareness on sickle cell disease and assesses to medical care is a major challenge in Nigeria. Lack of awareness has led to the increased birth rate of children with sickle cell disease, stigma, poor access to health care, poor management and increased death rate of people living with the condition, hence the need for increased awareness, advocacy on its prevention, treatment and management.
Sickle Cell Awareness Forum (SCAF) is Port Harcourt’s leading active and most vibrant sickle cell awareness platform. Established in 1st March 2018 with a vision towards a Nigeria with declining sickle cell anaemia birth rate and a competent public and private healthcare system for people living with the condition, the non-governmental organisation has helped to create awareness, educate and enlighten the public through several communication channels targeted at the prevention, eradication, management and health issues surrounding sickle cell disease within the region of River’s state and beyond. In just its 18 months of existence SCAF has reiterated the need for and has ensured compliance and community participation key areas such as:
- Health Education on Sickle Cell Disease.
- Genotype awareness; by facilitating free genotype and blood group testing to the public at large.
- Increasing Health Care service delivery to people with Sickle Cell Disorder.
- Encouraging volunteer blood donation.
SCAF Blood Drive and Let’s Talk Sickle Cell are annual events held by the organisation. Premier editions were held in June 2018 in partnership with the University of Port Harcourt Teaching Hospital. Beneficiaries had free genotype, blood group and blood volume (PCV) Test, HIV, Hepatitis B and C screening. In June 2019, the SCAF Blood Drive had a greater impact. Significant progress was as to enlightenment touching volunteer blood donation and there were more people willing to donate, and much more people after screenings successfully donated.
Let’s Talk Sickle Cell has been facilitated through multiple On Air talks centred on Sickle Cell Awareness, social media awareness, WhatsApp discussion groups and Outreach to schools.
As an organisation, SCAF has been able to create a volunteer blood donor community of over 150 registered Donors and to link donors to recipients within short intervals of blood request; this has saved lots of lives. Having hosted two blood drives since 2018, the beneficiaries of the blood from the drive included people living with sickle cell disease, accident & emergency patients and Obstetrics patients utilizing on site and social media platforms.
Presently, SCAF is focused on becoming a frontier in the awareness, care and management of Sickle Cell Disease in Southern Nigeria and beyond. The organisation hopes to keep bridging the gap with knowledge and care.
As a way of commemorating the month of September which is Sickle Cell Awareness Month, SCAF will be having the 2nd Edition of Let’s Talk Sickle Cell and SCAF Blood Drive 2019.
The event is scheduled as follows:
- Date: 20th September 2019
- Venue: Centia Christian School, Rukpokwu, Rivers State
- Time: 11am prompt
And will feature:
- Sickle cell Disease Sensitization/Health talk for students of the school
- Free Genotype Test for 100 individuals
- Volunteer Blood donation( Drive)
- Provision of Routine drugs for People living with Sickle Cell for one month.
Twitter - @Sicklecellaf_ph
Facebook – SIckle cell Awareness Forum.