Also part of the UPMC family:
Darryl Watkins has the HbSS variant of sickle cell disease.
An inspiring, uplifting individual, he is married with three children, all of whom carry the sickle cell trait.
Watkins says that he began to understand the profound impact sickle cell disease would have on his life at the tender age of 6 or 7. He wanted to participate in peewee sports and his parents wouldn’t allow it, because becoming overheated or dehydrated could cause serious health problems for him.
“With each passing year, the discussions I had with my parents about participating in sports became increasingly intense,” says Watkins.
Watkins lost his sister to sickle cell disease when she was just 17 years old. At the time, he was still only a child himself.
Dealing with the pain of this disease and watching a loved one suffer and die from it has proven especially challenging for Watkins.
“My sister suffered a lot more than I did because I didn’t really start having [pain] crises until I was about 12 years old. It was hard watching her suffer. I just wanted to take the pain for her.
“Losing her hurt a lot, but I think it also helped ignite my passion for building awareness about this disease and making a difference to my community despite my illness.”
Watkins’ natural optimism carries a tone of hope for others suffering from sickle cell disease and dealing with the associated health issues and the negative stigma of having the inherited blood disorder.
Perhaps one of the most challenging aspects of sickle cell disease for adults involves holding down full-time employment.
Those with sickle cell often miss work — sometimes for days or weeks — due to complications of the disease. When employers don’t understand the disease, and the impact it has on a person's everyday life, they may jump to conclusions about their employee that are simply incorrect and unfair.
Darryl Watkins talks about his experience.
“When I landed my first job out of college, I suffered a very severe pain crisis and became hospitalized. Once I was able, I phoned my manager to touch base with her and she fired me while I was lying in the hospital bed.”
Upon reading this account, many people might be shocked. But for sickle cell patients, this happens far more often than you might think.
Watkins explains,
“I had that experience one other time. I had just gotten home from the hospital after having another excruciating pain crisis. I called my manager to let him know that I felt better and would return to work soon. He fired me on the spot. Luckily, my manager’s supervisor called me right back and offered me my job back.”
These stories may seem hard to imagine, but this is real life in the professional world for many people with sickle cell disease.
It’s not all bad, though.
Watkins talks about his best employment experience (his current one) and how it transformed his professional life.
“One of the most awesome work experiences I’ve had occurred when the Pennsylvania Sickle Cell Society came and put on a luncheon for some people in my department. They educated my co-workers about sickle cell disease, its complications, and what people with SCD deal with on a daily basis.
“The entire team changed the way they approached me. It made my working environment incredibly motivating and truly helped me feel a part of the team rather than an outsider.”
