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Stigma impacts the treatment of sickle cell patients

INDIANAPOLIS — Through thick and thin, Jeanette Williams and Kenyana Esco have seen each other through their toughest times.

Although they are best friends, they are more like sisters, with a bond that cannot be separated.

Even through sickle cell disease.

“Even though we carry the same disease, it affects us differently,” Williams said.

Now in their thirties, Williams and Esco have lived with SCD for decades with each day unpredictable since the last.

According to the CDC, sickle cell disease is a group of inherited red blood cell disorders. SCD impacts the shape of cells, leading to a cut in blood flow, causing severe pain and organ damage.

Sickle cell disease can cause constant pain and fatigue, often limiting a patient’s ability to perform daily tasks.

“It’s hard to even try to keep a job,” Williams said. “I don’t know if I’m going to be sick in two hours, or I don’t know if I’m going to be sick in two days.”

“Pain can be a day in my legs or a day in my chest,” she added.

While pain changes, care concerns, even in hospital, remain the same. Williams says it’s a constant battle for doctors to take her seriously in emergency situations.

“When we have to go to the ER and our doctors can’t put us on a drip to get pain medication, that ER doctor doesn’t know us day-to-day,” she said. “It’s always ‘Oh, are you sure you’re in pain?’ or “Hey, we can only give you a limited amount of medicine, and then after that we have to readjust you to see maybe if that person is really really in crisis.”

Often, Williams says it’s a gamble going to the ER not knowing if a doctor can vouch for your situation.

“If we’re admitted, the doctor in a hospital, even if he’s a doctor, doesn’t really know what sickle cell disease is and how to treat it,” Williams said. “It’s a bit like a guessing game. I hope my hematologist, or a doctor who works with him, is on call.

Lack of education about sickle cell disease is one of the factors preventing adult patients from getting the care they need, experts say.

“When healthcare professionals say people don’t look like they’re in pain, our patients aren’t believed, and then they lose faith in their healthcare facility, and it just creates this spiral of mistrust that’s confusing. our ability to care for people,” said Dr. Andrew O’Brien of IU Health.

Dr. O’Brien directs the adult sickle cell disease program at IU Health. He says systemic solutions are needed to tackle stigma.

“Almost exclusively, sickle cell disease occurs in people of color,” he said.

“We cannot underestimate the impacts of systemic racism and historical inequalities,” Dr O’Brien said. “There has historically been much less funding for sickle cell research than similar genetic disorders that primarily affect white populations, things like cystic fibrosis or haemophilia, have historically gotten much more research funding than the sickle cell disease.”

“This not only impacts our ability to treat and have ways to help people with sickle cell disease, but also our understanding of the disease, its behavior, its manifestation. We just don’t know enough,” he added.

Since SCD is inherited, it is a disorder that many grow up with throughout their lives.

Dr. O’Brien says children with SCD may have a more manageable experience because the care environment is much more nurturing. However, the transition to adult care, he says, is concerning.

“When you change and grow deeply rooted in this pediatric health care system, which is very nurturing, very supportive, then you kind of get thrown into adult health care, which you don’t” , he said, “and then you show up as a predominantly colored person, saying you’re in pain, when you don’t look like you’re in pain like people are used to seeing. It’s a very abrupt transition, a very different approach that people are taking.

At IU Health, O’Brien says their team is constantly looking for ways to provide resources and support for SCD patients at all levels. He says the goal is to create a structure designed for them, including support staff not only doctors, but also nurses, social workers, research staff, mental health experts and other areas of health. expertise to help patients defend themselves, no matter where they are.

Meanwhile, Williams is using her experience to educate others about the impact of SCD and what people can do to support them during this difficult journey.

“We just want the same care as anyone else with any other disorder or disease,” she said. “I don’t think we should have to go through all these different criteria or if anyone thinks we’re suffering.”

“Just be there. Don’t be a judge. We don’t need to be judged. We need help,” Williams said.