“It’s affecting us the most”: Gabriel Badejo’s The Sickling brings sickle cell crises to light

Growing up as a Nigerian immigrant, my parents were acutely aware of the sickle cell crisis facing Nigeria. So much so that when I turned 17, my dad made sure to tell me that when I start dating, I need to get my blood tested to figure out if I was a carrier.

At the time, sickle cell anemia was more of an idea that my parents were fanatical about than an active risk to my health. Going into health research in university, I would learn more and more about how common it was in Nigeria.

Sickle cell anemia is a genetic blood disorder that affects red blood cells, causing them to become misshapen, frequently blocking blood vessels and causing sharp pain, swelling, and other painful symptoms, known collectively as a sickle cell crisis. A disease so often considered an early death sentence, it predominantly affects Black and brown people along the malaria belt in West Africa. 

Later in adulthood, my mom would tell me stories of relatives and family friends who had children with sickle cell and the pressure that put on their families. The difficulty navigating the healthcare system. The affliction of sickle cell became more and more real to me.

To date, though, no story of sickle cell has been as striking and personal as Nigerian-Canadian filmmaker Gabriel Badejo’s debut documentary, The Sickling.

Comprising Badejo’s self-recorded footage of his life dealing with the condition, family videos and photo archives, and interviews with physicians and researchers;  the documentary brings a grounding look on his journey through the healthcare system, the impact of the condition on his family and the injustices faced by patients in the medical system.

As Badejo captures his experience undergoing an experimental stem cell treatment for sickle cell, we see just how impactful even the idea of a future outside of sickle cell looks for him and his loved ones.

The openness of sharing those experiences is a new one for Badejo.

“I was very opposed to telling my story and even letting people know,” he says to me over Zoom. “Friends would visit me in the hospital and if they took a picture of me, I would be upset and ask them to delete it.”

The change came with a major sickle cell crisis he experienced in 2018. While seeking treatment at a hospital, Badejo experienced a “breaking point,” for all the poor treatment he was receiving across his life. He then set out to do something about it, combining his film industry know-how with his lived-experience. 

“Usually the creators of [a documentary] are outside of that community — outsiders looking in,” he explains. “But for me, I’m in the eye of the storm — this thing is coming from a real place.” 

The pain tolerance needed to live with something like sickle cell into adulthood is abundantly high, but enduring that pain at all can frequently put afflicted people in bad graces at the hospital. 

Dr. Isaac Odame, a pediatric hematologist based in Toronto who features in the documentary, explains that children are taught to do whatever they can to distract themselves from the pain. Listening to music, dancing, humming, anything that  can help keep their minds away from the discomfort. 

“These are all things that I’ve learned to do to help me cope with the pain I’m experiencing, right? But those things are not good things to medical professionals,” Badejo shares. “When you’re in that level of pain, people expect to see you laid out as if you’re bleeding to death.”

Dr. Sharl Azar, a hematologist at Massachusetts General Hospital featured in the documentary, says that sickle cell being a disease of Black and brown people means that racism in care is almost a guarantee. Research funding for studying the disease is severely lacking. Treatment for the disease is extremely rare, and outside of North America and Europe even rarer. 

As Azar notes in the film, cystic fibrosis, another recessive genetic disease, receives substantially more research funding compared to sickle cell, despite being significantly less common .

Throughout the documentary, Badejo showcases how pivotal familial support was for him throughout his experience with the disease. He recalls his family’s dedication to his health and willingness to fight for him at every turn. 

“When I was a kid, my mom took me to the hospital and she [saw that] I wasn’t getting better — she demanded me to get transferred to [SickKids]. She had to make a big scene for that to happen,” he says. “But thank God she did because if she didn’t do that, I would have been dead.”

Being taken along Badejo’s journey was so striking as another Nigerian raised in Toronto. But in Nigeria, sickle cell realities can be much harsher. The film closes out with Badejo’s trip to Nigeria after his treatment. Despite Nigeria having the highest prevalence of sickle cell anywhere in the world, funding for sickle cell research and medicine is negligible compared to what it is in Canada.

He tells me about visiting Sickle Cell Foundation Nigeria in Lagos, a medical facility that provides care to all aspects of the disease for afflicted people and their families. One of the very few places where treatment can be found in the most populated city in the country, the site does not receive a dollar of government support, Badejo says.

“Here in North America, when you apply for a job, they’ll ask you for a background check for criminal history. Over there, they’re asking for your blood type to see if you have sickle cell or not,” he explained. “Even if they do hire you, your coworkers don’t even want to be around you or shake your hand because they think that you can infect them or something.”

Badejo called the experience of understanding the sickle cell impact in Nigeria eye-opening, and believes that this documentary can touch both the diaspora and those afflicted back home.

“There’s so much stigma in the Black and brown community about not just sickle cell, but just anything that can be perceived as negative. People don’t want to talk about that,” he said. “We can’t continue to keep avoiding these things because it’s affecting us the most.”

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Fundamentally moved by the film, I got my mom tickets to see the world premiere in Toronto’s Hot Docs Ted Rogers Cinema. When sharing the details of the film, she sent me a text saying that Badejo was her cousin’s son and that she had personally been in the hospital during one of his sickle cell crises when he was a child.

Already familiar with much of his story, she was further moved to see him fight through it and honour his journey with the documentary. 

To yourself feel moved by the story of my apparent second cousin, you can find The Sickling on CBC Gem on October 14.