Here's what we can do for National Sickle Cell Awareness Month
This September, let's continue to make progress for the sickle cell community
For the sickle cell disease community, September is an important time for advocacy and raising awareness, because it’s National Sickle Cell Awareness Month. This year’s theme is “Sickle Cell Matters.”
For me, the month isn’t only about raising awareness; it’s also about educating the public, advocating for better healthcare, and creating meaningful change that improves the lives of people with this disease.
There are four areas of action I’d like to see this month: education, healthcare, research and funding, and community.
Education starts with understanding that sickle cell is a genetic blood disorder that affects millions of people around the world. While it predominantly affects people of African descent, it’s not exclusive to this group, which is a common misconception. Many people misunderstand the disease in other ways, too.
This awareness month, I’d love to see more of the general public educate themselves about the disease and figure out ways to support our community. In London, where I’m from, several events are taking place with this idea in mind. Other events are happening globally. Check with your local sickle cell charities to see what tools they offer to educate people about this condition.
In terms of healthcare, one of the most challenging realities I’ve faced is being in a hospital where the staff doesn’t know how to take care of me. Some healthcare providers lack adequate knowledge about sickle cell disease. This can lead to misdiagnosis, delayed treatment, and a general lack of empathy and understanding for those living with the condition.
All of the sickle cell patients I’ve had the pleasure of meeting have told me about times when medical professionals have either misunderstood or dismissed their pain crises. By dedicating an entire month to raising awareness, we can work toward changing this narrative and ensuring that healthcare providers are better equipped to recognize and treatsickle cell effectively.
Step up the funding
Despite the significant burden that sickle cell disease places on patients and healthcare systems in general, research into new treatments and potential cures has been historically underfunded. This lack of investment is partly because sickle cell disease primarily affects marginalized communities that often have less political and economic power to advocate for themselves. Working in research has shown me that there are vast amounts of studies out there on the most niche medical conditions. But sickle cell disease doesn’t seem to be a priority.
