A Powerful Sickle Cell Awareness and Black History Month
Highlights and Reflections: by Hazel Attua
What an incredible and action-packed Sickle Cell Awareness Month and Black History Month it’s been! Oleander and I spent a lot of time at various events with different organisations including the Sickle Cell Society. The September was filled with inspiring moments, powerful discussions, and unforgettable encounters that reinforced the importance of advocacy, education, and research in the Sickle Cell (SCD) community.
My efforts began on the 7th September at London’s Black on the Square with the Sickle Cell Society, where we had a stall to help talk about Sickle Cell and raise awareness about the importance of blood donations. While Oleander simultaneously attended the New Horizon Community Outreach Sickle Cell and Thalassemia event at Hackney Empire. It was a day filled with spectacular presentations and discussions. We swiftly moved onto Genomics England community health event on the 8th September, Oleander and I had the privilege of meeting Primrose Granville, the creative force behind the two-part YouTube series The Primrose Files: Sickle Cell Warriors. Her series is an incredible resource for raising awareness and fostering a deeper understanding of the condition, and it was an honour to meet someone so committed to empowering our community.
Later that month we had a joint Solace and Essex Support Group featuring Professor Paul Telfer, who delivered a highly engaging presentation on treatments and potential cures for Sickle Cell. His insights and openness in addressing the community’s pressing questions were invaluable as always.
On the 30th September at the prestigious Cambridge Symposium, Jayson and I had the honour of meeting Professor Willem H. Ouwehand and Dame Professor Sally C. Davies. We participated in a panel, discussing our film for NIHR and NHSBT on genotype blood testing, and shared how crucial ongoing research is for our community. The conversations were incredibly motivating and served as a reminder of the importance of advocacy within healthcare and academia alike.
In October, I collaborated with the Sickle Education Series for an event at Brunel University, where we conducted workshops for medical students, professionals, patients, and carers. Dr. Steven Okolie and Dianne Addei led remarkable presentations on Sickle Cell and Health Inequalities, helping bridge understanding and foster empathy among future healthcare providers.
I also launched our first breakfast club for parent-carers and carers at The Breakfast Club in Hackney Wick. The aim was to create a space for support and connection within the community, and we look forward to holding more sessions for patients and carers alike. Then I was lucky enough to join Sarah from the Sickle Cell Society at Shell Tower, where Sarah gave a great presentation on the importance of blood donations and advancements in sickle cell treatments, and we had a panel discussion to follow. Shell was extremely kind in return by rewarding us with cake, lots of cake.
Rounding out the month, Oleander and I hosted a stall at Hackney Council and participated in the Proud 2 B Black event at Plexal, among others. This is still all the while Oleander and I are advocating/ comforting patients & carers that are in hospital. Every interaction, every conversation, strengthened our resolve to keep pushing for awareness, equality, and improvements in care. This month has reminded me of the impact of community, collaboration, and continued research in transforming SCD care. Here’s to more awareness, more advocacy, and a brighter future for those with Sickle Cell.
One London article
Improving joined-up care for Londoners with sickle cell disease. For more information please click.
Netflix Show Supacell is Raising Awareness of Sickle Cell Anaemia Supacell is a British superhero series created by Rapman (AKA Andrew Onwubolu) offers a unique take on the superhero genre by intertwining the narrative with real-world issues, particularly sickle cell. The series stands out for its representation of Black British culture and its innovative storyline where the superpowers are linked to the sickle cell trait.
World Sickle Cell Day!
On World Sickle Cell Day, dedicated stalls were set up at both Queens Hospital and Homerton University Hospital to raise awareness about Sickle Cell. The stalls became a hub of activity as doctors, nurses, and community advocates came together to provide invaluable information and support to the public.
Doctors, Clinical Nurse Specialists nurses and were on hand to offer medical advice, share insights on the latest treatments, knowing your genotype and answer questions about the management of sickle cell. Their expertise provided attendees with a deeper understanding of the condition and its impacts.
HCC and Solace community advocates brought a unique perspective, sharing personal stories and advocating for better resources and support networks. Their presence emphasised the importance of community solidarity and the need for ongoing advocacy to improve the lives of those affected by sickle cell.
Together, these professionals and advocates created an informative and supportive environment, highlighting the importance of collaboration in addressing the challenges of sickle cell. The stall not only provided education but also fostered a sense of community and collaborative effort in the fight against this condition.
UK Thalassaemia Society Patient Involvement
Find out more about the UKTS events that you can get involved with.
Saturday morning exercise classes are also available. Show off your artistic flair in an art competition, or become an advocate for fellow patients - there is something for everyone.
Transition to Adult Care
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