Invisible Warrior: Sickle Cell Disease societal engagement project
Increasing awareness of sickle cell disease
If you would like to get in touch with any questions about the project, please contact us via email at email@example.com
The Invisible Warrior project is designed to increase the understanding of sickle cell disease. Next to increasing awareness around what is the disease and who can get it, our project also focuses on the effects this disease has on the mental health of patients and their support networks. Our team visits local schools and, in parallel, organises workshops for patients and their friends and family.
The Invisible Warrior societal engagement project is supported by Imperial’s Rapid Response Seed Fund.
What is sickle cell disease?
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.
Digital school visits
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.
Interactive workshops for patients, friends and family
We host online interactive 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.
Louisa is a sickle cell warrior, sharing her life story to raise awareness of this disease, its effect on mental health, and invisible disabilities.
This video was created by Elfy Chiang for the Invisible Warrior project.
Meet the Invisible Warrior Team
|Louisa is a Sickle Cell Warrior. Born with sickle cell disease SS, she has been affected by the disease her whole life. Louisa is determined to share her story to raise awareness for sickle cell disease, its effects on mental health and invisible disabilities. The Invisible Warrior project is developed around Louisa’s life story, which she shares in our sessions and you can find in the video above.|
|Linda van Keimpema is a science communicator and educator, and strategic teaching fellow at the Department of Immunology and Inflammation. Linda is Project Manager of the Invisible Warrior societal engagement project.
Find her on LinkedIn or follow @linda_science on Twitter and Instagram.
|Josefin Ahnström is a Lecturer in Haematology in the Centre for Haematology. Josefin is the scientific advisor and role model of the Invisible Warrior project. Follow her on Twitter at @AhnstromJosefin.|
|Elfy Chiang is an illustrator and science communicator with a background in Biological Sciences. She works with scientists and educators to create engaging and fun visuals to communicate science.
Find her work at elfylandstudios.com or follow @elfylandstudios on Twitter, Instagram, or Facebook.
|Ellie Cawthera is our public engagement adviser for this project. She specializes in science communication and digital public engagement with research. She is part of the Public Engagement team.
Follow Ellie on Twitter and Instagram with @EllieCawthera