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A First of its Kind: The Sickle Cell Anaemia Comic Book

Sophie’s comic book project aims to raise the profile of the social issues and challenges that people living with Sickle Cell Disease (SCD) undergo. This will help the community understand challenges faced by the children and their caregivers and appreciate the role of research in finding better treatments for the disease. SCD is an inherited red blood cell disorder that results in the formation of abnormal haemoglobin. There are over 300,000 children born with SCD every year with most births occurring in sub-Saharan Africa.

Please tell us about yourself and what your research interests are?

Sophie:  I am a molecular epidemiologist with a keen interest in red blood cell genetic conditions like sickle cell disease (SCD). My research aims to describe the burden of sickle cell disease in Kilifi, Kenya.

Why Sickle Cell Disease? What was the inspiration/motivation to focus on SCD?

Sophie: Despite being a minority in the population the decline in the prevalence of infectious diseases there is a rise in non-communicable disease hence the need to focus on other diseases like sickle cell disease as the patients are the ones who would mostly present to hospital.

Tell us briefly about the CPE grant that you just won?

Sophie: The AAS Community and Public engagement grant is a 6-month project that gives researchers an opportunity to interact with their community.

What motivated you to apply for the AAS Grant?

Sophie: Being a lab-based researcher, the experience of getting involved with the community was a new area for me and I looked forward to learning from the patients and their parents.

What informed the comic book idea?

Sophie: The need for children participating in SCD research to understand what they suffer from so the comic book is meant to highlight the experiences of the affected families but also answer some of the questions that the patients/parents would like answered. I also wanted the message to be communicated in a way that would be entertaining to the younger patients.

What is exceptional about the comic book idea?

Sophie: This is the first child-friendly means of communicating about SCD on the continent and will be available in English and Swahili.

How will you go about implementing the project?

Sophie: We have had focus group discussions and in-depth interviews with the patients and their caregivers that highlighted the experiences, challenges and knowledge gaps that form the storyline for the comic book.

What have been the significant interventions realized in the past 10 years in the region in regard to SCD?

Sophie: We now have apart from Hydroxyurea, FDA has recently approved 2 drugs for managing crisis and gene therapy is also available. The latter two would take a while to be accessible on our continent. What does the future hold in regard to this particular project? This project has opened up other areas for future research and community engagement projects.