3d illustration of sickle cell anemia red blood cells

Increasing awareness of sickle cell disease

General enquiries


If you would like to get in touch with any questions about the project, please contact us via email at invisiblewarrior.scd@imperial.ac.uk

View upcoming workshops

Overview

The Invisible Warrior project is an award-winning societal engagement project, 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.

Title

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 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

Meet the Invisible Warrior Team
 Louisa 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 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 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 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 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 .
Follow Ellie on Twitter and Instagram with @EllieCawthera 
Christina Crossette-Thambiah 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 workshop, builds connections with sickle cell organisations, and supports our social media content.
Invisible Warrior team
Useful links and resources

Video - playlist widget

Sickle Cell Disease and how it made me an Invisible Warrior

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.

Sickle Cell Disease and how it made me an Invisible Warrior

Sickle Cell Disease and how it made me an Invisible Warrior

Sickle Cell Disease and how it made me an Invisible Warrior

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.

The Invisible Warrior…… I’m fighting the enemy within

The Invisible Warrior…… I’m fighting the enemy within

Members of the Invisible Warrior team describe the multifaceted impact of living with SCD.

Appearances may not always be as they seem!! Louisa and members of the Invisible Warrior team describe the multifaceted impact of living with Sickle Cell. The physical, mental and emotional trauma experienced by those with SCD, is so often made harder but the lack of awareness within society. The Invisible Warrior’s mission is to increase awareness so we can see better outcomes.

What is a vaccine, and how have they changed over time?

History of Vaccines

What is a vaccine, and how have they changed over time?

Dr Tamlyn Peel (scientist and University teacher) tells us all about vaccines: what is a vaccine, and how have they changed over time? What are the benefits of taking a vaccine, for an individual or for a population?

How I reduced my pain medication with my psychologist

How I reduced my pain medication with my psychologist

How I reduced my pain medication with my psychologist

Taofik has Sickle Cell Disease, and was keen to reduce his pain medication. Hear his inspiring story of how he did this with the help of his psychologist, and supported by his haematologist 

Living with sickle cell disease | Imperial College podcast

Living with sickle cell disease | Imperial College podcast

Living with sickle cell disease | Imperial College podcast

Louisa, Sickle Cell Disease Warrior, 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)

Current and future Sickle Cell Disease treatments

Current and future Sickle Cell Disease treatments

Current and future Sickle Cell Disease treatments

Dr Norris Igbineweka (Haematology Registrar at King’s College Hospital NHS Trust & Clinical Research PhD Fellow at Imperial College London / Oxford University) joined an Invisible Warrior workshop to discuss current and future treatments for sickle cell disease.

'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