Strength in support: Patient leans on sickle cell nurse navigator at IU Health West

By Emma Avila, epackard1@iuhealth.org, writer for IU Health’s Indianapolis Suburban Region

Aaron Egaru, a young man with sickle cell disease, finds support at IU Health West through Jade Parker-Dinkins, an adult sickle cell nurse navigator who has the disease as well.

Aaron Egaru doesn’t remember a time when he wasn’t managing his sickle cell disease. He was diagnosed at the age of two after experiencing intense pain.

“Both of my parents are sickle cell carriers,” he says. “I have felt like this as long as I can remember.”

Sickle cell disease is a genetic disease that affects red blood cells, causing them to become sickle-shaped and block blood flow. This can lead to a number of serious health complications, including pain, blood clots and infection.

September is National Sickle Cell Awareness Month. The disease impacts thousands in the United States and not much is known. It has limited treatment options and no cure.

For Egaru, who is now 24, the disease leads to pain crises, sudden and severe episodes of pain that can last several days or even weeks. He manages the pain at home with medication, but he seeks hospital care when his pain level reaches a 10 out of 10. Those trips to the hospital are relatively frequent.

“Sometimes it takes weeks, sometimes months,” he explains. “I feel the pain in my chest area, my abdomen, arms, legs, basically everywhere.”

Finding support

It was during one of his trips to IU Health West that Egaru was connected with Jade Parker-Dinkins, IU Health’s first adult sickle cell nurse navigator.

Parker-Dinkins connected with Egaru about a month into the job at IU Health West, which she began in January 2024. In this role, she helps provide support to patients who come to the hospital with sickle cell disease. She works to build a report with each patient and show them she is someone they can trust and lean on for support.

“With Aaron, I got to see past the layers of him just coming here and being in pain. We got the opportunity to talk about a lot of things that matter to him,” Parker-Dinkins says.

She shared with Egaru that she herself has sickle cell disease and has had to navigate pain crises throughout her life.

“Being able to share some of that commonality and empathy with having sickle cell myself, I think that was part of what made the difference in him knowing that it was safe to open up,” she says. “It’s different for each person. My nursing badge, my sickle cell diagnosis, there’s nothing that automatically entitles me to a patient’s trust, and I have to give them that reason to trust me.”

Forming a bond

For Egaru, Parker-Dinkins' knowledge of sickle cell and her ability to make him laugh, even when he was in pain, helped them develop a bond. He feels she is someone with whom he can be open.

“She gets it, you know? She knows what you’re going through,” he says.

Parker-Dinkins is a source of support for patients with sickle cell disease, but she is also a resource. When working with someone, she provides clinical resources, but she also works to connect them with support services in the community.

“It’s giving them an opportunity to see that I'm not only saying that I'm going to do something or that I have their best interest, but taking the time to show and prove it, even if that means that someone isn't initially receptive to outreach,” she says.

Parker-Dinkins continues to be a resource for Egaru, even when he isn’t in the hospital. He focuses on staying hydrated, avoiding infection and taking medication to manage his pain.

“The pain can attack you at any time, even at your workplace,” he says. He is currently looking into job opportunities that will provide flexibility when he experiences pain crises. Seeing Parker-Dinkins manage sickle cell disease and have a successful career is an inspiration to him.

“I know that I now have the skills to not only survive but thrive with sickle cell disease, but it doesn't mean as much when you look to your left and your right and people that are going through the same thing that you're experiencing that haven't asked for these experiences,” Parker-Dinkins adds. “It largely impacts the way that you see yourself in the world with the limitations that are placed at an early age. And so, I do want people to know that it is possible to live full, healthy lives and to still go after the things that you're passionate about.”