A sickle cell center is leading the way in treatment with a new and innovative approach to caring for people with the disease.

Dr. Sharl Azar, medical director of the Comprehensive Sickle Cell Treatment Center at Massachusetts General Hospital (MGH), hired a medical exercise specialist to work with his patients on fitness programs that will help them improve their life.

“One of the hallmarks of this disease is that patients with sickle cell disease cannot or should not exercise, because exercise can exacerbate the symptoms of their disease,” Azar told ABC News. “This can plunge them into the painful crises that characterize the disease.”

According to the Centers for Disease Control and Prevention (CDC), sickle cell disease is a red blood cell disorder in which the affected person has abnormally shaped (sickle cell) red blood cells rather than round ones due to abnormal hemoglobin, a protein that carries oxygen. The sickle cells die early, leading to a shortage of red blood cells. They also block blood flow when blocked in the vessels. The restricted blood flow can cause the patient to experience an attack of excruciating pain.

This painful crisis is all too familiar to Amy Diawara, 27, who has suffered from sickle cell disease her entire life. She said a seizure felt like excruciating, shooting pains deep in the muscles of her body.

Diawara is a patient of MGH and worked with his medical exercise specialist, Jen Miramontes, on a personalized training program to run the Boston Athletic Association Half Marathon on November 12.

“You need people who are going to want to walk with you to the finish line and I’m very grateful to Jen and Dr. Azar,” Diawara told ABC News. “They encouraged me and that’s how I got to this point, and I’m super excited to lead Boston’s halftime show this Sunday.”

Miramontes, 59, not only coaches Diawara, she agreed to run the race with her. She has completed a total of 80 marathons throughout her life and created a training program specifically tailored to Diawara’s needs.

“We’re going to keep him at a mile, three times a week for the first two weeks,” Miramontes, who said she had to be careful when training Diawara, told ABC News. “Whereas if I had trained someone who didn’t have sickle cell disease, the process probably would have been two to three times faster to get to where we are (today).”

Other factors Diawara had to watch out for were extremely hot and cold climates during his races, as dehydration and extremely cold temperatures could trigger a seizure, according to Miramontes. To avoid this, she had Diawara run on treadmills for much of her training.

Miramontes was hired by the hospital through a grant, according to Azar. She has been selected to provide medically approved fitness programs tailored to each patient she sees. Jen, who lives in California, travels to Massachusetts monthly to evaluate patients and create an exercise program that meets each individual’s needs and goals. Afterward, she stays in constant communication and coaches patients through virtual care, Azar said.

According to Azar, although scientists have known the genetic cause of sickle cell disease for more than 100 years, population studies of the disease lag far behind other chronic congenital diseases like cystic fibrosis or hemophilia. Azar says this is because sickle cell disease primarily affects people of color, leading to a lack of adequate resources for research into the disease.

According to the CDC, 100,000 people live with sickle cell disease in the United States, but Azar says the data hasn’t been properly updated in decades. One in 365 African Americans is born with the disease and one in 13 African Americans is born with the trait inheriting only one copy of the sickle cell gene. If these numbers are extended to the current African-American population, they are expected to well exceed 100,000, according to Azar.

“It’s shameful to say that here we are in 2023, putting together the first program in which we explore the role of exercise in patients with sickle cell disease.”

Most people with the condition have always been advised not to overexert themselves by exercising due to the risk of seizures, but Diawara and Miramontes are bucking the trend.

“I was shocked and extremely disappointed to find that there was very, very, very little research on exercise and sickle cell disease,” Miramontes said. “If you’re looking for cancer, MS (multiple sclerosis) or Parkinson’s disease and trying to find research on how fitness can affect the disease, how it can have a positive impact on the disease, you can find thousands and thousands of studies. I found two (for sickle cell disease). And so it’s certainly groundbreaking at the very least.

According to Azar, the Food and Drug Administration is expected to approve for the first time in December a gene therapy product that will help improve the lives of people with sickle cell disease. As for Diawara, she doesn’t think she will follow the gene therapy treatment since she rarely has seizures. She is more focused on her training and achieving her goal of running her first half marathon.

“I’m super excited because, again, this is something I didn’t even think I could do,” Diawara said. “It was always just a dream. But now it feels like it’s manifesting into a real goal that’s about to be achieved.”

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