INDIANAPOLIS — Through thick and thin, Jeanette Williams and Kenyana Esco have seen each other through the toughest of times.
While they are best friends, they’re more like sisters, with a bond that can’t be separated.
Even through sickle cell disease.
“Even though we carry the same disease, it affects us differently,” said Williams.
Now in their 30s, Williams and Esco have lived with SCD for decades with every day unpredictable from the last.
Per the CDC, sickle cell disease is a group of inherited red blood cell disorders. SCD impacts the shape of the cells, resulting in cutting off blood flow, causing intense pain and organ damage.
SCD can cause constant pain and fatigue, often limiting a patient’s ability to do daily tasks.
“It’s hard to try to even maintain a job,” said Williams. “I don’t know if I’m going to be sick two hours from now, or I don’t know if I’m going to be sick two days from now.”
“The pain, it can be one day in my legs or one day in my chest,” she added.
While the pain changes, the concerns for care, even in the hospital, remain the same. Williams says it’s a constant battle getting doctors to take her seriously in emergency situations.
“When we have to go to the emergency room, and our doctors can’t get us into infusion to get pain meds, that ER doctor doesn’t know us on a day to day,” she said. “It’s always ‘Oh, are you sure you’re in pain?’ or ‘Hey, we can only give you so much medicine, and then after that we have to readjust you to see maybe if this person is really truly in a crisis.’”
Often times, Williams says it’s a gamble going to the ER not knowing if a doctor there can vouch for her situation.
“If we’re admitted, a hospital’s doctor, even though they’re a doctor, they aren’t truly aware of what sickle cell is and how to treat it,” said Williams. “It’s kind of like a guessing game. I hope that my hematologist doctor, or a doctor that works with him, is on call.”
Lack of education when it comes to sickle cell disease is one of the factors experts say is hindering adult patients from getting the care they need.
“When health care professionals say that people don’t look like they’re in pain, our patients aren’t believed, and then they lose trust in their health care setting, and then it just creates this spiral of mistrust that disrupts our ability to take care of people,” said Dr. Andrew O’Brien of IU Health.
Dr. O’Brien leads the Adult Sickle Cell Disease Program at IU Health. He says systemic solutions are needed to address the stigmas.
“Almost exclusively, sickle cell disease occurs in people of color,” he said.
“We cannot underestimate the impacts of systemic racism and historic inequities,” Dr. O’Brien said. “There has historically been dramatically less funding for sickle cell disease research than similar genetic disorders that predominantly affect white populations, things like cystic fibrosis or hemophilia, have historically gotten dramatically more research funding than sickle cell disease.”
“That not only impacts our ability to treat and have ways of helping people with sickle cell disease, but also just our understanding of the disease, how it behaves, how it manifests. We just don’t know enough,” he added.
With SCD being inherited, it’s a disorder many grow up living with through their entire life.
Dr. O’Brien says kids with SCD may have an easier experience coping with it as the care environment is much more nurturing. However, the transition to adult care, he says, is concerning.
“When you shift and have grown up deeply rooted in this pediatric health care system, which is very nurturing, very supportive, and then you just get sort of dumped into adult health care, which is not that way,” he said, “and then you show up as predominantly a person of color, saying you’re in pain, when you don’t sort of ‘look like’ you’re in pain the way people are used to seeing. That is a very abrupt transition, a very different approach people get.”
At IU Health, O’Brien says their team is constantly looking at ways to provide resources and support to SCD patients across the board. He says the goal is to create a structure designed for them, including support staff of not only doctors, but nurses, social workers, research personnel, mental health experts and other areas of expertise to help patients advocate for 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 rough journey.
“We just want the same care that anybody else with any other disorder, or disease, has,” she said. “I don’t feel like we should have to go through all this different criteria or if somebody believes we’re in pain.”
“Just be there. Don’t be a judge. We don’t need to be judged. We need help,” Williams said.