Sickle Cell Awareness Day: How and Why We Raise Awareness

For this World Sickle Cell Day, we asked our Health Leaders, "How and why do you raise awareness for sickle cell disease (SCD)?" In response, they shared their personal experiences of educating and advocating in their communities and beyond.

Wunmi Bakare

"For many years, I studied the depiction of sickle cell disease in the media – print magazines, film, television, and digital media – upset by the false narrative and misinformation that was put forth. Someone needed to take ownership of telling our stories authentically by highlighting inspiring sickle cell warriors who are living well with sickle cell. I rose to that media challenge and wanted to take back control of our narrative, giving young warriors hope that they too can beat the odds stacked against them.

"My desire to advocate for marginalized groups came from a place of purpose, identity, passion, and the pursuit of social inclusion and equality. With a career in public relations spanning well over a decade, my approach to sickle cell advocacy was to focus on erasing the stigma of sickle cell disease through proactive and reactive engagement with the media.

"I created the hashtag #SickleCellProdigy to remind patients in the global community that they are truly one-of-a-kind, carrying the burden of this debilitating blood disease while trying to navigate their lives. My goals are to raise awareness, erase the stigma, and ensure equitable outcomes for patients globally through #SickleCellProdigy."

Elle Cole

"At the core of my reasons for advocating for sickle cell disease is to help reduce the stigma surrounding sickle cell disease and to show my daughter that we have to make life better for the causes we believe in. Raising awareness for sickle cell disease is crucial to improving the lives of those with the condition.

"When my children were young, I created a blog and sought to tell as many people as possible about the how, why, and what behind sickle cell disease. Now, I have moved from advocating as one person to advocating with sickle cell organizations.

"The Sickle Cell Community Consortium and Cayenne Wellness Center and Children's Foundation are two organizations I regularly partner with to advocate for SCD. In addition, another approach to sickle cell advocacy that I use to raise awareness about the disease is to use social media and online platforms to connect with others affected by the condition."

Andressa Hunsel

"I raise awareness for SCD in different ways. First, I use my relationships with the different medical teams because I believe it is important for them to understand where we are coming from. So I explain our journey in different ways and make them understand that sickle cell disease is so much more than being 'sick' or using 'medication.'

"Another way I raise awareness is by writing children's books and developing tools for children and their families to make them understand what sickle cell disease is all about. Knowledge is power! And that is something I'm working very hard on. The earlier children understand what is going on in their body, the easier it is when they get older."

Halimat Olaniyan

"I raise awareness for sickle cell anemia because I grew up without a positive example of what having this disease meant. I grew up fearing the consequences of my disease, what people would think when I got sick, or how they would react to knowing I have SCD.

"At some point, I realized how fortunate I was and that my disease did not have to define me. I also realized a lot of people with my disease, especially youth, had the same fears even just talking about it. I felt that had to change, and that change could start with me.

"So I started writing about my experiences with sickle cell and speaking openly and publicly about it so others could know they're not alone. And ultimately to remind myself that I'm not alone and that my disease doesn't have to be a roadblock between me and my dreams and goals. I hope to inspire others to do the same or at least know the same is true for them too."

What about you?

So, how do YOU raise awareness? Not sure where to start? Take a look at the Health Leader journeys of Andre Harris, Jenica Leah, and Grace Adeyinka to get inspiration and ideas.