Former Riley patient is now IU Health’s first adult sickle cell nurse navigator

At IU Health West, Jade Parker-Dinkins is working on the inpatient side of sickle cell care. She knows it well, as she has sickle cell herself. Her new role at the hospital is a full-circle moment.

By Charlotte Stefanski, cstefanski@iuhealth.org, writer for IU Health's Indianapolis Suburban Region

Jade Parker-Dinkins had been a healthy infant—no illnesses, colds or colic. But when she was around 18-months old, her mother could sense something was wrong.

While Parker-Dinkins was at the developmental stage for walking, she would often refuse to and wouldn’t stop crying.

Eventually, her mother brought her to the Emergency department at Riley Children’s Health in downtown Indianapolis.

“With testing there at that time, that's how she discovered that I had sickle cell disease,” Parker-Dinkins explains. “I received one trait from my mother, one trait for my father, and it's recessive.”

Sickle cell disease is a genetic disease that affects how red blood cells are shaped as they travel through the blood vessels of the body. This causes complications related to how well the red blood cells can carry oxygen; as well as issues with blood clots, like strokes and pulmonary emboli.

It impacts thousands in the United States and not much is known about the disease—which has limited treatment options and no cure.

After the care Parker-Dinkins received as a child at Riley, she decided to become a nurse herself. Now, she’s joined the team at IU Health West as IU Health’s first adult sickle cell nurse navigator to help forward sickle cell care and better the lives of her patients.

“It really feels like a full circle moment to be here in this way,” Parker-Dinkins says.

The impacts of sickle cell

While anyone can have sickle cell, the disease primarily impacts Black and African American populations. According to the Centers for Disease Control and Prevention (CDC), it occurs in about one in 365 Black or African American births and one in every 16,300 Hispanic American births.

The most common issue—and what typically sends those with sickle cell to the Emergency department—is pain crises. During a crisis, red blood cells make microscopic clots in the bones and can cause severe pain.

Parker-Dinkins compares it to a bad traffic jam of I-465.

“You have all of these lanes and you have one accident where this oddly shaped vehicle has scraped the side of the median and you see these marks. That's pretty much what sickle cell does—it scrapes and it damages the tissues, which the blood is circulating in, and creates tissue damage, and affects a lot of joints. Wherever this is happening, it can cause stroke, it can cause vascular necrosis where the tissue is rotting,” Parker-Dinkins explains.

When Parker-Dinkins isn’t experiencing a crisis, she can move about freely without pain. But when she is having a crisis, she says it feels like glass shards, pulsating and traveling to different parts of her body.

This, of course, has impacted Parker-Dinkins throughout her life. She remembers missing several weeks of school throughout her elementary, middle and high school years due to the crises.

“It was very isolating. I remember being afraid of telling my friends that I had sickle cell and coming back to school after missing weeks and not really knowing how to explain it,” she recalls.

Despite the challenges, she didn’t stop that from achieving her dreams of becoming a nurse and helping those who also have sickle cell.

Becoming a sickle cell nurse navigator

Growing up, Parker-Dinkins spent a lot of time in the hospital due to crises. While it could be very isolating, she also become fond of her care team at Riley Children’s Health.

The compassion they showed her made her feel more like a person and not just her disease.

“When I could get up and out of bed, I would take my IV pole to the nurse's station to hang out with whomever was there,” she says. “Thankfully, they oftentimes wouldn’t turn me away and they made me feel alive.”

Even at a young age, Parker-Dinkins looked up to the nurses and even thought that maybe she could one day help others. She stuck with the plan, earning her associate and bachelor’s degrees in nursing from Kentucky State University.

“There really wasn't a backup plan,” Parker-Dinkins says. “But there were so many times where I was almost convinced that it wouldn't be a reality for me to be able to be a nurse and care for other people, just because of my disease.”

But she did—and the registered nurse is now a sickle cell nurse navigator at IU Health West.

Parker-Dinkins joined the West team in January 2024. She’s had 12 years of nursing experiencing, and for the last five years, she’s worked as a healthcare implementation specialist, specifically providing consultation and support for long-term care facilities.

Her previous role drastically changed due to the COVID-19 pandemic, with she and a team of eight providing guidance on COVID-19 testing and registration for staff and patients to more than 500 nursing home facilities in the state of Indiana.

Now, at IU Health West, she’s working closely with and providing support to every patient that enters the hospital with sickle cell, all while educating team members about the disease.

“Everything that I've been through and experienced as a patient—and all the evidence-based practice that I've had as a nurse—I get to bring both of those worlds together to impact the patient experience and the healthcare team experience at the same time,” she says.

When working with patients, Parker-Dinkins is providing clinical resources as well as working to connect them to community support services.

She often finds that patients of color have several social determinants to health that negatively impact their ability to have health equity and to be compliant with their chronic disease management, like sickle cell.

Because of that, she’s also taking on a role as an educator, working to improve both team member and patient communications when it comes to sickle cell care.

“I realize a lot of times, sickle cell patients don't always have enough information to make informed decisions that will positively impact their health. I’m working to explain to them how these processes work and impact their care, as well as conveying to team members the daily processes and how they affect care for patients with sickle cell and their disease management,” she says. “I think it's opening up the door for greater understanding on both parts and helping people to have opportunity to feel what is real and what is valid from both perspectives.”

Serving patients throughout the West side of Indianapolis

When patients experience a sickle cell crisis, they typically first visit IU Health West’s Emergency department. And over the years, that number has continued to grow.

Along with creating the sickle cell nurse navigator role, the hospital has previously worked within the last few years to standardize the care of patients with sickle cell in the Emergency department and the unit’s observation unit.

West’s six-room observation unit has served as a comfortable, quiet and short-stay place for those experiencing a pain crisis as team members work on a plan for treatment.

Parker-Dinkins and her colleagues are also working to break the stigma against sickle cell disease, which also often includes racial bias.

While she just joined the IU Health West team this year, Parker-Dinkins’ patients are already letting her know they’re excited for her new role. And when appropriate, she likes to share her own personal journey with them to help build their trust.

“The patients are very grateful and excited to see that there is progress being made here at IU Health and that there is someone with sickle cell that looks like them—that can represent them in rooms where they don't have the opportunity to be present,” she explains. “For me, that, that's everything. It feels the best to know that the people that I'm serving feel that I'm providing them an excellent service that's part of the core values of IU Health excellence.”

As Parker-Dinkins continues to explore her new role, one of her hopes is that the important work she does will outlive her and not just start and stop with the team she is currently working with.

She notes that the average age for someone with sickle cell is about 20 years less than the national average.

“I think that my greatest hope is that the work that I'm doing—and that we're doing together—outlives me. I'm looking forward to getting on the ground, getting the ball rolling. I feel like we're already gaining momentum within these first two months of me being here,” Parker-Dinkins says. I think it's going to happen one interaction at a time, one act of kindness, of compassion, at a time. I look forward to experiencing more kindness around sickle cell and its treatment.”

IU Health is looking for passionate individuals to join our team. For more information on available job openings, click here.