Increasing awareness of Sickle Cell Disease
Contact
If you have any questions about the project, please email us at invisiblewarrior.scd@imperial.ac.uk
Overview
Invisible Warrior is an award-winning societal engagement project, designed to increase the understanding of Sickle Cell Disease.
Although Sickle Cell Disease is one of the fastest growing genetic conditions in the UK, knowledge of it is limited. The Invisible Warrior project aims to increase awareness around the disease and who can get it, as well as highlighting the effects it has on the mental health of patients and their support networks.
The team visits local schools and organises workshops for patients and their friends and family. The project and workshops are built around Louisa’s story, a sickle cell warrior who was born with Sickle Cell Disease SS. She shares her experience of growing up and living with the disease to help educate people and reduce medical stigma.
Sickle Cell Disease and how it made me an Invisible Warrior
Download a print version of the above video (created by Elfy Chiang for the Invisible Warrior project).
The Invisible Warrior Programme is supported by the West London Haemoglobinopathy Coordinating Centre and previously received funding from Imperial’s Rapid Response Seed Fund.
Title
- What is Sickle Cell Disease?
- Sessions for young people
- Workshops
- Meet the Invisible Warrior Team
- Merchandise
- Useful links and resources
- Awards
Sickle Cell Disease (SCD) is a genetic disease that affects the red blood cells in the body. Red blood cells are normally round. In a patient with SCD, some of the red blood cells become deformed and have a sickle shape (see animation below).
SCD 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. The 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.
.gif)
The Invisible Warrior team deliver interactive sessions, digitally and in-person, for young people from year 6 upwards, using an interactive quiz and creative activities to help the young people engage with the material being discussed.
These sessions educate school-aged children about blood science (with scientists from Imperial College London joining some workshops to explain their work and answer questions), as well as teaching young people what Sickle Cell Disease is and what it is like to live with the disease through hearing Louisa's story.
The team also deliver sessions at Imperial's White City and South Kensington campus as part of STEM Futures – an outreach programme of activities and support for students of Black heritage who are interested in STEM.
The Invisible Warrior team host online and in-person workshops for anyone who is affected by Sickle Cell Disease – whether that is patients, their friends and family, or medical professionals. The workshops cover a range of topics and often explore lesser-known or rarely addressed subjects, emphasising the impact that Sickle Cell Disease has on mental health.
Workshops include (click the links to watch a recording):
| 1. Sickle Cell and Dating |
| 2. How can we improve the relationship between patients and medical professionals? |
| 3. Current and future Sickle Cell Disease treatments |
| 4. Being a Sickle Cell Disease Advocate |
| 5. History of Vaccines |
| 6. Sickle Cell and PhD: Experiencing chronic pain while being a scientist |
| 7. How I reduced my pain medication with the support of my psychologist |
| 8. Sickle Cell and The Workplace: Policy and Procedures – Know Your Rights |
The team have also hosted sessions at public engagement events like Imperial Lates and the Great Exhibition Road Festival.
View upcoming and past workshops
 |
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. |
 |
Christina Crossette-Thambiah is a Haematology Specialist Registrar at Hammersmith Hospital and Research Fellow at Imperial College London Centre for Haematology. Christina looks after individuals affected by sickle cell disease in her clinical role and is particularly passionate about this unique patient group and also has a special interest in the subject of health and race equity. |
 |
Ronnie Oyewole supports the Invisible Warrior project behind the scenes: she helps to develop and deliver our workshops, builds connections with sickle cell organisations, and supports our social media content. |
Collaborators:
 |
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. Follow Ellie on Twitter and Instagram with @EllieCawthera. |
Want to support the work we do and help raise awareness of invisible disabilities? You can buy merchandise by getting in touch via invisiblewarrior.scd@imperial.ac.uk or by speaking to us at our inspiring events and workshops.
You can choose to have our logo or artwork that was created at one of our workshops. We want Invisible Warrior to be seen, so we operate a pay-what-you-like policy as long as it covers our costs!
Sickle Cell links:
Sickle Cell podcasts and documentaries:
- BBC Newsbeat documentary - Sickle Cell: Fighting for care
- Hema Now: Episode 22: The State of Sickle Cell
- Ri Science Podcast, episode: The science behind sickle cell disease
Reads on Sickle Cell, race and health inequality:
- Sickle Sagas – a Column by Dunstan Nicol-Wilson
- 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
Podcasts on race and health inequality:
Mental health and hidden disabilities links:
The Invisible Warrior Programme has been recognised by multiple President's Awards for Excellence in Societal Engagement:
- In 2022, Louisa was awarded the Inspirational Partner Award
- In 2023, the Invisible Warrior project received the Achievement Award and Dr Linda van Keimpema received the Leadership Award
Learn more about the Invisible Warrior Project
-(1).jpeg)
Video - playlist widget
I’m fighting the enemy within | Belonging interview
Louisa and members of the Invisible Warrior team are interviewed for Belonging - a series interviews with Black, Asian and Minority Ethnic students, academics and professionals.
The physical, mental, and emotional trauma experienced by those with Sickle Cell Disease is often made harder but the lack of awareness within society. In this interview, the Invisible Warrior team describe the multifaceted impact of living with SCD, aiming to increase awareness so we can see better outcomes.
I’m fighting the enemy within | Belonging interview
Members of the Invisible Warrior team describe the multifaceted impact of living with SCD.
Louisa and members of the Invisible Warrior team are interviewed for Belonging - a series interviews with Black, Asian and Minority Ethnic students, academics and professionals.
The physical, mental, and emotional trauma experienced by those with Sickle Cell Disease is often made harder but the lack of awareness within society. In this interview, the Invisible Warrior team describe the multifaceted impact of living with SCD, aiming to increase awareness so we can see better outcomes.
Living with Sickle Cell Disease | Imperial College podcast
Living with sickle cell disease | Imperial College podcast
Louisa discusses the Invisible Warrior project and teaming up with Imperial academics to raise awareness of living with the disease, including its impact on mental health (segment starts at 10:55)
Take our Sickle Cell Quiz
Written by Linda van Keimpema, with graphics and illustrations by Elfy Chiang. A few references are included in the quiz, Sickle Cell Quiz references (Invisible Warriors).
'Sickle Together' by John Lawal
I would hold your hand in the rain
We would jump and splash water all over
And we can defy our crisis
So long as we sickle together
I would hold your hand in the sun
We would run and throw paper planes all over
And we can taunt our crisis
So long as we sickle together
I would hold your face in my hands
We would stop and gaze hard into each other souls
And we can stay on top of our crisis
So long as we sickle together
Our crisis one
Our pains one
Our cries one
Our cause one
I love you
And as I write
I laugh to cry
And cry to laugh
Knowing we are
Bloodily bonded
Lovingly loved
Worthy Warriors
One Love, The Whisperer
