When a stroke left Kevin Wake temporarily unable to verbally communicate, first responders charted him as intoxicated or on drugs.
But his stroke was induced by sickle cell disease, a genetic blood disorder that Wake was diagnosed with as an infant — only days after his 2-year-old brother died as result of the same disease.
While being cared for in the emergency room, Wake caught the attention of a nurse and wrote "sickle cell stroke" on a piece of paper. "[S]he was able to convince the provider to change my triage strategy. And that probably saved my life," Wake said.
Wake's experience is not an isolated incident.
According to the Centers for Disease Control and Prevention, sickle cell "occurs among about one out of every 365 Black or African American births," but discrimination in health care means there's a lack of awareness about its effects.
For people who inherit the disease, their red blood cells are elongated, shaped similarly to a banana. The unusually shaped cells can get clogged while traveling through the body, causing health complications such as a stroke or a "pain crisis" — often times leading to hospitalization.
A pain crisis can be debilitating and require medical intervention. But, as in Wake's case, patients can sometimes thought to be drug seekers instead of suffering a legitimate medical issue.
Wake is now the president of the Uriel E. Owens Sickle Cell Disease Association for the Midwest, which provides assistance to individuals and families affected by the disease, and does advocacy work with state lawmakers to pass legislation raising awareness for sickle cell disease.
To reduce the chance of a misdiagnosis, Wake now keeps his medical records accessible and wears a bracelet identifying himself as a sickle cell warrior, a practice he says is becoming more common for individuals living with the disorder.
"I still feel like there's a great need for increased training within the medical field," Wake said. "And so that's part of my advocacy is really to put a face to the disease and talk to med students so that they are familiar a little bit about the disease before they see a patient in their worst condition in the ER."
Although sickle cell forced Wake to retire early from his pharmaceutical career, he's outlived the 25-year-old life expectancy he was given as a child.
"You know, it, I think has really made me a stronger person to begin with. I have worked really hard to overcome my challenges," Wake said. "If I can impact just one or two people living with sickle cell to have a better experience a better journey, then I feel like I made my mark and and I'm doing what I need to do here on this earth while I'm still here."
- Kevin Wake, president, Uriel E. Owens Sickle Cell Disease Association for the Midwest
