Case study: sickle cell in Africa

In the previous step, you heard about creative methods to share lived experience. In this step, you will learn about how storytelling can be used to also help patients understand genetic conditions.

Sickle cell disease is an inherited (genetic) disorder that affects red blood cells, causing them to change shape and become obstructive in blood vessels.

It can cause unpredictable pain, anaemia, infections and severe complications. Symptoms commonly appear in childhood and continue throughout a patient’s lifetime. The disease is especially severe in people with Black African heritage. In 2011 it was reported that about 50–80% of the estimated 400,000 infants born each year with sickle cell disease in Africa die before the age of 5 years (see reference).

In recent years, sickle cell research and patient information initiatives have been gaining momentum, leading to improvements in patient care. In sub-Saharan Africa, patient advocates have been at the heart of this work.

The Sickle In Africa consortium has been leading several of these initiatives, including co-producing patient information with sickle cell patients. This video from Dr Nchangwi Syntia Munung explains in more detail.

In the next step, you will hear from patients with sickle cell who use their lived experience to effect change in Africa.

• Reference: Grosse, SD ∙ Odame, I ∙ Atrash, HK ∙ et al. (2011) Sickle cell disease in Africa: a neglected cause of early childhood mortality. Am J Prev Med. 2011; 41:S398-S405