This World Sickle Cell Day, I’m grateful for UK advocacy groups

In honor of World Sickle Cell Day, held June 19, I would like to highlight some incredible U.K.-based organizations I’ve had the pleasure of working with recently. These groups are not only changing the narrative of what it means to live with sickle cell disease, but they’re also challenging stigmas and expanding perceptions about what those of us with the condition can achieve.

One standout organization is Black Blood Matters UK, which leads impactful campaigns to encourage people to donate blood. I recently collaborated with them on a project aimed at raising awareness of the importance of blood donation — not just for those living with sickle cell, but for anyone who needs a transfusion because of a traumatic accident, complications during childbirth, or related needs.

This group has done a fantastic job of normalizing the donation process and emphasizing that giving blood saves lives. But one critical message stands out: We need more Black blood donors.

Because of the genetic diversity in our communities, certain blood subtypes, such as Ro, are more common in Black people. And because the majority of sickle cell patients are Black, we need donors with the same blood subtypes. Increasing Black donor participation gives our community a better chance of accessing a lifesaving blood match.

Blood isn’t something we can stock indefinitely; it’s a live, ever-needed resource. A huge thank-you to Black Blood Matters UK for their relentless efforts to raise awareness, promote education, and foster community engagement.

Recommended Reading

March 18, 2024 Columns by Dunstan Nicol-Wilson

My advocacy efforts are paying off through new blood donors

In the world of creative advocacy, Akanji Studio deserves significant recognition. The team there has found a beautiful way to merge art with lived experience, using powerful visual storytelling to shed light on the emotional and physical struggles those with sickle cell face. Its exhibitions are a testament to the profound ways in which art can convey pain, resilience, and hope.

Similarly, COAG Comics recently released a comic that beautifully and accessibly portrays issues surrounding blood donation and sickle cell awareness. These kinds of creative outlets serve as an essential reminder that advocacy doesn’t always have to take the form of panels and podcasts. Art, storytelling, and comics are just as powerful in shifting narratives and inspiring action.

I also want to highlight the Sickle Cell Society, which continues to lead campaigns that change public perceptions of sickle cell and advocate for better patient outcomes. I recently had the opportunity to work with them on a podcast exploring unconventional career paths for people with sickle cell, such as refereeing in sports.

Initially, I associated refereeing with elite-level football, thinking, “How could someone with sickle cell cope with that kind of physical demand?” But this experience expanded my perspective. Referees are needed for a wide range of sports and levels, from pro football to the Paralympics. Here in the U.K., there’s a shortage of referees from Black, Asian, and minority ethnic backgrounds. It’s inspiring to think differently about what’s possible, and I’m grateful for conversations that shift perceptions.

To all the individuals and organizations I’ve encountered recently, thank you. Your work isn’t just raising awareness; it’s creating real, lasting change. Countless other organizations, advocates, and support groups show up every day to support the cause. Your work matters. Your advocacy echoes across oceans.

Remember, sickle cell awareness isn’t just a one-day event. It’s a daily commitment to visibility, support, research, and dignity. On this World Sickle Cell Day, I extend my gratitude to every individual and group working to uplift, educate, and empower those affected by this condition.

Together, we’re changing the narrative, and that’s something to be proud of.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.