When Tahirah Austin-Muhammad was born in the late 1980s, testing for sickle cell disease in newborns was not a standard practice at many hospitals. So when her symptoms appeared at age 4 – tiredness, aches and pains, stomach aches – Tahriah’s parents treated it the only way they knew how – Tylenol, homemade rubs and lots of love.

But when she started kindergarten, it became clear that something else was going on.

“I loved to play, but it tired me out quickly. I couldn’t keep up with my peers physically,” she recalled. “Everything came to a head when I passed out at school. I stood up, walked to the door and blacked out.”

Tahirah describes the situation as “being blurry” when she woke up, but she remembers feeling tired and being in so much pain that she couldn’t sit up. Her dad arrived at the school and drove her straight to Children’s Hospital of Philadelphia (CHOP).

She was first diagnosed with leukemia, but then Dr. Kim Smith, a physician who specialized in sickle cell disease, took a second look at her lab work.

“Sickle cell disease is often misdiagnosed. That’s why it’s important to have doctors who look like us,” Tahirah shared.

That was her first sickle cell crisis at age 6, but it would be far from her last. Tahirah spent most of fourth grade hospitalized at CHOP.  Later her spleen, gallbladder and appendix were removed in the first of many major surgeries.

Despite it all, she credits her parents and CHOP family for instilling in her the belief that there’s nothing she couldn’t do.

Pediatric vs adult care

Tahirah earned a bachelor’s degree in Biology from Neumann University and has traveled the world. She has thrived in spite of her condition. But like all people living with sickle cell disease, her transition from pediatric to adult care was wrought with obstacles.

“My first experience in an adult [emergency department], I sat there for over 10 hours. I cried. I called my social worker at CHOP and begged to come back,” she recalled. “She provided me with real-time advocacy – what to say to get the help I needed. It’s so stressful when you’re in a pain crisis.”

In the U.S., sickle cell disease predominately affects people who are Black/African American or Latinx. Tahirah explains that it’s often seen as a childhood disease.

“The goal pediatrics had was for us to survive to adulthood, but the adult side wasn’t ready for us,” she said. “There is racial bias and extreme inequities in health care. I realized there was a need for support for adults with sickle cell once I got into adult care. Too many of us were dying for preventable things.”

Sickle cell advocacy

In 2017, Tahirah co-founded the Philadelphia-based Crescent Foundation, whose mission is to support sickle cell survivors, families and communities with evidence-based research and advocacy. Among its initiatives, the foundation helps sickle cell patients ages 18-24 transition into adult care. It also provides case management to help patients and their families coordinate their medical and social service needs. Importantly, the foundation also educates the next generation of health care professionals about sickle cell disease.

Tahirah admits that as her status, and the status of her fellow Crescent Foundation co-founders, changed in the city of Philadelphia, so did their access to quality health care.

During the COVID-19 pandemic, Tahirah was hospitalized for the first time in 6 years. She describes being put into triage within 5 minutes of arriving in the ER before being admitted for a lung infection. At the same time, in the same hospital where she was receiving compassionate treatment, a young woman was repeatedly calling the Crescent Foundation pleading for help because she had already been in the waiting room for 8 hours.

“I felt helpless; the only difference was they recognized me. My care has changed, and it shouldn’t have,” she said. “Good, compassionate care should be given to everyone at all times.”

Blood donations help

Like many sickle cell survivors, blood transfusions play an important role in Tahirah’s treatment – but it has to be the right match. Repeated blood transfusions over someone’s lifetime can cause a patient to develop a life-threatening immune response against blood from donors that is not closely matched to their own – something Tahirah has experienced more than once.

In Philadelphia, blood from donors who self-identify as Black or African-American is marked with a blue tie tag, designating it as a potential match for a sickle cell patient. Extra tests are performed to ensure recipients receive the right blood.

“I wouldn’t be sitting here today without someone with a good heart,” said Tahirah. “Thank you to whoever is donating blood, but we need so much more.” 

Visit our website to learn more about how blood donations help people living with sickle cell disease and the importance of maintaining a diverse blood supply for patients.

Written by Alana Mauger