Living with sickle cell: From isolation to pursuing medical school and advocacy

“I am privileged enough to have access to resources that help me manage my disease but that’s not the case for everyone. I hope to do work that helps other sickle cell patients with the support they need to be successful.”

An inherited condition disproportionately affecting African Americans

Sickle cell disease is an inherited group of blood disorders that affect hemoglobin, a protein in red blood cells that carries oxygen. It affects millions of people throughout the world but affects African Americans at disproportionate rates. In the United States all newborns are screened for the condition.

Red blood cells are usually round and flexible so they move easily through blood vessels. But in sickle cell, some red blood cells are shaped like sickles that can become rigid and sticky, preventing them from properly delivering oxygen to all parts of the body.

These crescent shaped cells die early, which causes a constant shortage of red blood cells. They can also get stuck and clog the blood flow, which may not only cause pain but other serious problems such as infection and stroke.

While there is no cure, treatments can relieve pain and help prevent complications associated with the disease.

“Many families are just devastated by this diagnosis,” said Sharon Singh, MD, a pediatric hematologist and oncologist at Mott who oversaw Olaniyan’s care at UM. “This is an unpredictable and chronic disease requiring complex specialized care and the patient journey can be very challenging. It’s important to have a team supporting you along the way to help you make the most informed decisions and address all aspects of your care.

“It’s so wonderful to see a patient pursue her dreams and find success like Halimat has. Not only is she thriving and coming full circle by going into the medical field herself but she’s advocating and educating others, which is incredible. She brings hope.”

Singh, who recently traveled to Washington DC for the US Senate’s introduction of a sickle cell expansion bill to enhance medical training, says while patients with sickle cell are living longer and healthier lives, there’s still a great need for more investments in research.

UM researchers have joined colleagues across the country in efforts to better understand the complications of sickle cell disease and find new treatments for patients through several research studies.

“This is a disease that predominantly affects people from the most low-resourced and disadvantaged communities,” Singh said. “It’s also not always easy to get treatment depending on where you live. We have a shortage of providers who care for adult sickle cell patients, which can cause disruptions in care for patients aging out of pediatric care.”

“Hopefully as we make the disease more visible, we can fill gaps in funding and resources.”

Empowered and “unstoppable”

Olaniyan says she’s lucky to mostly experience mild disease, with painful episodes much less frequent now. Occasionally she has fatigue, anemia and joint pain, often triggered by stress and a sign from her body that she needs to take a break.

With Singh’s support, she also began managing the disease with hydroxyurea, a drug therapy that reduces painful episodes and long-term harm and complications.

She says the multidisciplinary approach to care at Mott was critical for her, recently even interviewing Singh for sicklecell.com about this strategy to treatment. In addition to seeing Singh at the Mott clinic, Olaniyan had access to a pain specialist, registered nurse, social worker, psychologist, dietician and an obstetrician gynecologist who specialized in sickle cell.