In loving memory of Aisatu Beadford-King, a sickle cell warrior
The Africa Sickle Aid founder died of complications from the disease
While sickle cell falls under the umbrella of rare disease, it doesn’t feel so rare among my circle of acquaintances. In my community, somebody always knows someone else with sickle cell disease and has a vague understanding of what it is.
In the broader community, however, much less is known about it, which is why many sickle cell patients become advocates. Unfortunately, sickle cell patients are all too commonly mistreated, misdiagnosed, and neglected, and our pain is too often not taken seriously. Advocates have been calling for change for a long time to demand equity in care.
The most brutal reality of living with sickle cell disease is that each vaso-occlusive crisis can lead to death. As patients with the condition, each of us is aware of that fact. Personally, I dissociate myself from the possibility of death as way of continuing my life. I’ve been almost arrogant in believing I’ll always recover and return to everyday life.
In memory of a fighter
The recent news of the death of a fellow advocate and friend, Aisatu Beadford-King, has jolted me out of this arrogance. I’d watched on social media as she was admitted to the hospital, because she often documented her sickle cell journey and hospitalizations online. This last time, I thought, “I’m sad she’s in the hospital, but I know she’ll be out soon.” I didn’t send her a message because I was confident she’d be quickly discharged.
Sadly, that wasn’t the case. It was the last time I saw her post on social media.
None of us know when our time will come, but it almost seems unfair when it happens to someone so inspiring and full of life. Aisatu, born in 1998, had so much more to give, and her departure on Feb. 19 was unexpected. When someone goes into the hospital, you expect them to get better. Not this time. It’s sad, devastating, and humbling to have to come to terms yet again with how cruel this condition can be.
Aisatu and I had connected via social media as we both grew into our advocacy roles. We were vocal about sickle cell disease and our experiences with it. We sent words of encouragement to each other during difficult times. Then, as fate would have it, we met in person here in England for a 2022 YouTube video panel discussion dedicated to spreading awareness about our disease. All of us that day, including former Bionews columnist Tito Oye, felt a strong sense of belonging and a mutual understanding that can only be achieved by people who’ve gone through similar experiences.
Our connection grew even stronger from that moment on, as we continued to encourage one another and exchange well wishes during our hospitalizations. Aisatu’s positivity, strong work ethic, and dedication to her craft were showcased by the charity she created, Africa Sickle Aid. Despite having the condition herself, she wanted to support others with it in the global community.
Her charity aims to spread sickle cell awareness and support its patients in Africa with care packages. It’s a worthy and thoughtful cause. In recent years, I’d found Aisatu’s smile and attitude about following her dreams encouraging. She once had a sickle cell crisis at one of her charity events, but still pushed through to ensure the event ran smoothly.
She was an inspiration to many in the community and became a part of many of our life stories. Since 2020, she has been part of mine and will continue to be. After all, Aisatu’s legacy doesn’t end with her death; she’ll live on through every person she interacted with. Her warmth, kindness, and caring nature will continue to motivate us all.
For this year’s Rare Disease Day, Feb. 29, I’m choosing to shine a spotlight on this one patient out of many who have lost their lives to sickle cell disease and its related complications. I know many parents, caregivers, and allies of the sickle cell community have experienced this kind of loss. To each patient, caregiver, and ally, I urge you to continue to support your sickle cell communities. Be present, be active, and don’t take time for granted. We need you.
Death is very much a consequence of sickle cell disease. Our community now mourns a true warrior who battled the condition until her final rest. Until we meet again, rest in perfect peace, Aisatu Beadford-King.
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.
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Ayivor Patrice Ewoenam
As someone battling the condition and currently facing one of its complications, I understand how it feels to lose someone who goes into crisis to treat a complication at the hospital and never comes back. My condolences to you and be strong.