Years passed before Adesayo Talabi, also known as Simply Sayo online, realized that her sister Elizabeth’s regular check-ups and medications were not just routine but signs of a severe blood disorder. Doctors revealed that Elizabeth’s body had stopped producing blood, with only 2% remaining, exposing the silent threat within their home.
Among Sayo’s parents’ eight children, only six survived. Two sisters succumbed to sickle cell disease—one as an infant and the other at nine years old. Sickle cell, a rapidly growing genetic condition in the UK, causes red blood cells to become sickle-shaped, leading to painful blockages that can harm organs, potentially causing blindness or fatal strokes.
Adesayo’s late sister, also named Adesayo, likely died from sickle cell complications as an infant without an official diagnosis. The lack of answers and persistent pain led the family to suspect sickle cell, a disease not well understood in Nigeria at the time.
Tragically, Elizabeth, another sister of Sayo, also battled sickle cell and passed away at only nine years old, following Adesayo’s untimely death.
Reflecting on her family’s genetic inheritance, Sayo expressed frustration at the lack of awareness and openness surrounding sickle cell within her community. Motivated by personal loss, she pledged to donate blood, recognizing the critical need for transfusions that could save lives.
Using her platform with over 581K TikTok followers, known as Simply Sayo, she combines poetry and advocacy to raise awareness and support for the sickle cell community, becoming a prominent voice for young advocates.
Witnessing the dire need for blood donors, Sayo partnered with NHS Blood and Transplant to launch ‘It Takes a Village,’ a year-long campaign aimed at recruiting 16,000 new blood donors from Black heritage backgrounds. The initiative seeks to address the scarcity of Black heritage donors and save lives.
Acknowledging the silence and stigma surrounding sickle cell, Sayo emphasizes the importance of open conversations and support for individuals living with the disease. Her personal experiences and interactions with affected families underscore the urgent need for broader awareness and action.
In a significant act of love and purpose, Sayo will undergo surgery in December 2025 to provide her bone marrow to her youngest sister, Rebecca, who lives with sickle cell. This transplant offers hope for a cure, highlighting the ongoing need for blood donations and advocacy within the sickle cell community.
By sharing her story and advocating for change, Sayo aims to break the silence surrounding sickle cell, normalize discussions about the disease, and ensure those affected receive the support and attention they deserve.