Phillip Okwo: The Crisis of Living Life Interrupted by Sickle Cell Disease

Patients with sickle cell disease (SCD) can experience vaso-occlusive crises (VOC) unexpectedly. Because it’s a very painful experience, they’re also commonly known as “pain crises” and can be triggered by a multitude of factors.

Phillip Okwo, a sickle cell patient, exemplified the intensity of a pain crisis in his theatrical production, Life Interrupted. Okwo created, and performed in, Life Interrupted to show how many different ways a single pain crisis can impact someone’s life, based on his real-life experiences.

The final moments in the last scene were especially emotional, for viewers, as well as for Okwo, as he’s shown writing a goodbye letter to his wife from the hospital. This scene was a real-life experience for Okwo, one that he lived through, but wasn’t sure he would.

The prognosis for him, when he was born, was that he’d likely not make it through adolescence. During his life, in that final scene, he was married with children on the way. He remembered that a part of him, in that moment, was at peace--he’d made it that far, at least.

“But having to go back and relive it,” Okwo said, “especially now on this side, and having 2 amazing kids, and thinking about how close--at least that I felt--I had come to potentially not even meeting them, that part is very, very emotional and kind of gut wrenching.”

He invited 5 doctors to take a front row seat and watch the performance. After the 4 scenes were over, Okwo came down off the stage and listened to each doctor’s reaction.

"By the time it got to the end, I was really emotional," Titilope Fasipe, MD, PhD, Assistant Professor of Pediatric Hematology-Oncology, Baylor College, said in an interview with HCPLive about the performance.

Not only does Fasipe have experience treating sickle cell disease in patients, but she lives with the disease too.

Many people who live with sickle cell disease also live with the anxiety that comes from anticipating a pain crisis. Okwo shared that anxiety-management is a big part of his sickle cell regimen.

Once a pain crisis begins, so does the stress of deciding whether or not to go to the emergency room, which is particularly anxiety-inducing for people with sickle cell disease. Research has shown that with more anxiety comes more pain in these situations, according to Okwo.

“So, it’s key for those of us, as warriors, to keep that anxiety in check,” Okwo said, “but it’s also incumbent on healthcare providers to really have an understanding of what we’re dealing with, so that we don’t feel anxiety about coming into the emergency room, or other settings, to be cared for.”

Watch the full performance of Life Interrupted followed by a thoughtful discussion about sickle cell disease in the video below.