Invisible Warrior: Sickle Cell Disease societal engagement project

Sickle cell disease is a genetic disease that affects the red blood cells in the body. Red blood cells are normally round. In a patient with sickle cell disease, some of the red blood cells become deformed and have a sickle shape (see animation below).

Sickle cell disease limits the red blood cell's ability to transport blood around the body and can cause episodes of severe pain in sufferers – called a crisis. Sickle cell disease is particularly common in sub-Saharan countries in Africa and in the UK mostly found in people with an African or Caribbean family background.

We digitally visit primary and secondary schools to deliver interactive workshops. In one part of the session, we focus on sickle cell disease: the students learn what sickle cell disease is, what causes it and who can get it. Then sickle cell warrior Louisa shares her life story living with sickle cell disease, after which the students can ask her questions. During this, the students will work on an exercise reflecting on mental health and invisible disabilities. In this exercise, students draw a person from the inside and the outside (this can be a sickle cell patient, or it can be themselves when they felt happy or low).

During the other part of the class, Josefin Ahnström talks about her life as a blood scientist at Imperial. Josefin explains the different components of blood, their function and how they can be studied in the lab. She shares images and videos working in the lab, talks about the cultural diversity of her colleagues and combining being a scientist with being a mother. Then students can ask Josefin questions about her life as a scientist, blood and her research.

We host workshops for sickle cell patients, their friends and family, and medical students. In the workshop, Louisa’s story is shared and is the starting point for a discussion with all attendees. The discussion is guided by a psychologist and will cover many of the difficulties sickle cell patients and their family and friends will come across. This includes the struggle to claim disability as a sickle cell patient, family issues, and stigma and shame around the disease. The workshop also focusses on what future medical doctors can do to support sickle cell patients.

Sickle cell disease (SCD) impacts everyone in a warrior's circle - their friends, family and loved ones - as this piece of writing so poignantly demonstrates: My Beautiful Sister (.pdf). As such, we welcome anyone who was been affected by SCD to attend our workshops.

View upcoming and past workshops

• Sickle Cell Society
• NHS – Sickle Cell Disease
• Mental Health Foundation
• Mental Health UK
• Mind
• Anxiety UK
• Hidden Disabilities
• BBC Newsbeat documentary - Sickle Cell: Fighting for care
• Code Red: Switch-up on sickle
• No One’s Listening Report

Reads on SCD, race and health inequality

• Medical science must address health disparities amongst different ethnic groups
• Why I keep banging on about racial disparities in the biomedical sciences
• When Actions Speak Louder Than Words — Racism and Sickle Cell Disease
• Are We About to Cure Sickle-Cell Disease?
• Gene therapy: Erasing sickle-cell disease
• Sickle Sagas – a Column by Dunstan Nicol-Wilson

Podcasts on race and health inequality

• Black Women in Science Podcast
• BBC Room 5 – episode 6: Jordan