Carolyn Rowley, PhD, Addresses Mental Health and Wellness in People with Sickle Cell Disease

Carolyn Rowley, PhD, is the executive director of the Cayenne Wellness Center, which is devoted to supporting people living with sickle cell disease (SCD) in California. Recently, the center launched the California Sickle Cell Disease Mental Health and Wellness Initiative to provide mental health services at no cost to those with the disease.

Unfortunately, in addition to the various challenges that people with sickle cell disease already face as a direct result of their condition, they often coincide with mental and emotional challenges as well. The initiative focuses on addressing these challenges, like depression and anxiety, which are prevalent in this population.

Rowley emphasized the importance of the initiative because there's been a need for mental health resources, particularly for those living with SCD. The Cayenne Center is known for hosting educational platforms, and according Rowley, the topic of mental health gets discussed in each one.

"We recommended that people seek out mental health, however, that's been challenging," she explained.

The center's community health workers conducted a focus group last year to get more insight on what clients are looking for and what would motivate them to participate in mental health care.

"They found out that their clients would like to go to a provider that looks like them and also knows about sickle cell disease," Rowley said. "And that's actually quite rare."

People with sickle cell disease, particularly children, may struggle with frequent hospitalizations due to pain crises if their parents or caregivers are unaware of the triggers that precede a crisis.

"I'm not speaking about the type of depression that is debilitating," Rowley clarified, "but the type of depression that leads to isolation at times, even as a child."

When a patient and their support system are aware of the patient's triggers that lead to a pain criss, that can be the difference between good and poor quality of life.

Rowley, who also lives with sickle cell disease, said that people have a choice when they realize a pain episode is coming and it's unavoidable, in how they face it. What she does is acknowledge that the episode is coming, but she tells herself "it's not going to shadow everything, it's not going to paint my entire picture."

"I encourage others to do what you can do to manage," Rowley said, "but it's about to come and you're about to be on top of it and so it won't be as bad as it could be, because now, you already know you have tools as to how you can conquer this next pain episode."