After losing two sisters to sickle cell disease, Adesayo Talabi speaks to the Mirror how she uses grief to break the silence, and push for more Black blood donors across the UK
For years, Adesayo Talabi, known online as Simply Sayo, thought her sister Elizabeth’s medication and frequent check-ups were just part of everyday life, not the warning signs of a life-threatening blood disorder. But when doctors revealed her body stopped producing blood and she had only 2% of blood left in her body, she realised the silent killer living in her home.
Sayo’s parents had eight children, but only six are alive today. Two of her sisters died from sickle cell, one as a baby and another at just nine years old. Sickle cell is the fastest growing genetic condition in the UK, where red blood cells are sickle shaped rather than circular leading to agonising blockages that damage organs and can lead to blindness or a fatal stroke.
Sayo’s late sister, also named Adesayo, is believed to have died from sickle cell complications as an infant but was never given a official diagnosis. Her constant pain and lack of answers led the family to suspect sickle cell, an illness that few understood in Nigeria at the time.
Sayo’s sister Elizabeth also suffered with sickle cell and sadly died at just nine years old, years after Adesayo’s tragic passing.
“It’s hereditary, all of my brothers are carriers [of the disease], I’m the only one in my family that’s not even a carrier. So, why is this being shrouded,” Sayo told The Mirror.
In the weeks after Elizabeth’s death, she made a vow to start donating blood, even though it was too late for her sisters, she couldn’t ignore the thought of others waiting for transfusions that might never come.
“There’s going to be other people who might be in that kind of situation where they really need blood and there won’t be any.”
Now known to her 581K TikTok followers as Simply Sayo, she uses her platform to mix poetry with advocacy, blending vulnerability and awareness in a way that’s made her one of the most recognisable young voices for the sickle cell community.
“I didn’t know you could die from sickle cell,” Sayo added. “And I don’t think it should have gotten to the point where a death had taken place for me to understand just how serious it was.”
“Why has it been so downplayed? Why is it something secretive? Why is it something that doesn’t get spoken about as much as it should” Sayo asked.
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Simply Sayo’s It Takes a Village campaign
What began as a personal promise turned into a national mission. Sayo has partnered with NHS Blood and Transplant to launch ‘It Takes a Village,’ a year-long campaign hoping to see 16,000 new blood donors from Black heritage backgrounds to address the urgent need for more Black heritage donors and save lives.
After her own experiences with sickle cell disease and the lack of blood donors, stories from strangers began to reach her, of siblings, parents and entire families who had lost someone too. Sayo realised the pattern was all too familiar.
“My grief is not unique, and so I just wanted to emphasize the fact that it is a communal thing, it’s a communal effort,” she said. “It takes a village to support each other, to improve things, to have the kind of conversations and impact that we need to have in order to be the change that we want to see.”
Sayo knows first hand how urgent the need is, as less than 5% of the UK’s blood donors are Black, yet 47% of Black heritage donors have the RO blood subtype which is crucial for treating patients with sickle cell, a blood type she describes as ‘liquid gold.’
Still the barriers to donation go beyond awareness, with medical mistrust, cultural stigma and lack of information continue to keep families quiet. “There’s a conspiracy of silence when it comes to sickle cell and all of the stigma surrounding it from people who mystify the condition a lot more than it needs to be mystified,” she told us.
Sayo hopes this campaign will help to break the silence around sickle cell and help to normalise conversations about the disease. She said: “People living with sickle cell disease deal with so much and they do so often by themselves and with very little support, the least we can do is have conversations where they are prioritised.”
A sister’s second chance
Her family remains at the heart of her mission. Sayo’s youngest sister, Rebecca, 16 lives with the disease that stole two siblings from them – but this year, that could change.
After years of waiting, Sayo will finally undergo surgery to give her sister her bone marrow in a life-changing transplant, with the process due to begin in December 2025, in an act of love she calls both, a privilege and a purpose.
“Hopefully she’ll be cured of sickle cell but in the meantime she still needs blood, and even after the fact, there are still people who need blood. I’m still going to be advocating for this, and I’m still going to be using my voice to the voices of sickle cell warriors.”
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