Titilope Fasipe, MD, PhD: Understanding Sickle Cell Disease Complications

Titilope Fasipe, MD, PhD, Assistant Professor of Pediatric Hematology-Oncology, Baylor College, not only treats sickle cell disease, but she also lives with it. If you already watched the first part of her interview, you can skip to 6:15.

She was invited to view a live performance of Life Interrupted, a 4 scene production that displayed what life is like for someone who has sickle cell disease--more specifically how a vaso-occlusive crisis (VOC), or a "pain crisis", can interrupt a patient’s life.

Individuals with sickle cell disease are just like everyone else, Fasipe explained, they’re meeting up with friends and family, going to work, living their lives and then instantly finding it all interrupted by pain, or one of the other complications of sickle cell disease.

Life Interrupted creator, Phillip Okwo is a sickle cell warrior who lives with the disease himself and decided to share his experience with the world. The performance reflected on real-life experiences Okwo has been through, and in it, he played himself.

“It was a very, very unique experience and it required a bit of soul searching,” Okwo said in an interview with HCPLive, “but at the end of the day this was about bringing awareness for sickle cell, and hopefully, helping healthcare providers to understand what it is we’re dealing with, not just physically, but also emotionally.”

In addition to the 4 thought-provoking scenes, the video included 4 important statistics about sickle cell disease in hopes of raising awareness, particularly among the healthcare population.

• On average, 18.2 school days a year are missed by students with SCD, accounting for 10% of the school year.
• 13% of adult patients with SCD experience anxiety.
• In a survey, 67% of patients delay or avoid going to the ER even when they know they should seek care.
• 50% of patients are discharged prematurely while still experiencing severe pain.

The last scene exemplifies why so many patients avoid going to the emergency room even when they know they should. Okwo and Fasipe shared that they’ve both had experiences like that but they remain hopeful for the future.

“We do feel like this could change if people really understood,” Fasipe said.

Fasipe explained that she rarely shares her personal story, or experiences, when talking with her pediatric patients and their families. She chooses to speak from the lens of hope and to focus on each individual patient’s journey to make sure they feel empowered as they grow up.

“My hope is that we change the story before this child, who’s 2 years old today, 5 years old today, 10 years old today, becomes 21, 30, 40,” she said, “and I hope they do not experience what Phil experienced, or what I’ve experienced.”

Empowerment was an important topic discussed by Fasipe and Okwo in “Behind the Scenes”. While it’s important for patients to be empowered to advocate for themselves in society and healthcare settings, it’s also important for the patient’s healthcare team to set them up for success.

“I really challenge physicians, doctors, providers, healthcare professionals, to really understand that sickle cell disease is a complicated disease,” Fasipe said. “It is a chronic one, but it has potentially unpredictable complications and some of those complications can be life threatening, and we have to respect that. And when we think of empowering our patients and our students we need to teach them to advocate for themselves and we need to give them the tools to do it effectively.”

Watch the full performance of Life Interrupted.