CARMEL, Ind. — "It's empowering to know that I get to be a voice," said Khajae Henry, a social worker at IU Health.
Inside IU Health, Henry spends her days as a source of support, a resource for patients and families coming through the hospital system, working as a social worker for those dealing with hematologic conditions.
Her drive to help others started at an early age after a social worker helped her own family.
“Due to my own condition and having my own battles with my own hem disorder from a young age and working with a social worker is why I was brought to the field," Henry said. "I had an experience where, due to lack of financials, my family had to rely on a social worker and my social worker went above and beyond, and I recognized that I want to be that for other patients and families."
Henry was diagnosed with sickle cell disease when she was just one year old.
According to the CDC, sickle cell disease causes red blood cells to become hard and sticky, turning from a round shape into a C-shape. It can cause pain and serious heart complications, according to Dr. Naveen Manchanda, an IU Health hematologist
“It causes them pain, but also it affects several organs in their body, including their brain, their joints, their heart, their lungs. So as time goes on, their organs start showing subtle, and then severe, effects. So as we take care of patients with sickle cell disease, we want to make sure they get adequate pain care, that their care is seamless,” Manchanda said.
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Sickle cell disease impacts around 100,000 Americans, according to the CDC. In Indiana, Manchanda said there are around 3,000 people living with it, but access to care, especially in more rural areas, can be a challenge.
“It’s very difficult sometimes to get care, and so our challenge has been really to establish a base for sickle cell patients to get the same care everywhere,” said Manchanda.
IU Health is working with the CDC, Johns Hopkins and other healthcare systems around the country to establish a database of patients with sickle cell disease, including where they live, if they have access to a physician, how often they're hospitalized and the level of care they're able to receive, according to Manchanda. The goal, he said, is to establish a standard of care for those with sickle cell disease regardless of where people live.
“Access to care is often a challenge," said Manchanda."So if they live in smaller towns in Indiana or in other states, they may not have hematologists close to them and access to care may be 50 miles away, 100 miles away."
“Any patient should be there in any part of the U.S. where they have access to care that is standard, and that involves the physicians, the ER, the hospitals. And so it is going to take some time, but it’s an excellent challenge to look forward to and make sure we fulfill the needs of this population," he added.
Henry said improving standards of care for those with hematologic conditions, including sickle cell disease, is critical for patients. She said her own care was often fragmented as a child.
"We come in, we say we're in pain and we're not believed. And imagine already in such discomfort and just wanting good care and you're having to beg for it. I think being in that situation myself and wanting to ensure that no one else has to be in that position where they feel as if not only they're fighting their body, but fighting those that are here to provide good care, holistic care," Henry said.
She said that's why she's motivated every day to be a voice for others and make sure patients can access the care and resources they deserve.
"I want to make to make sure that patient population, a disenfranchised population has a voice," said Henry.
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