Sickle Cell Warrior Learns Techniques From Her Mom at an Early Age to Help Her Cope With Pain Crises; Community Health Workers are Integral in Helping Warriors
“Unless you have sickle cell disease, you can’t possibly understand what it’s like to live with it every day.”
Sickle Cell Foundation of Georgia Inc. CEO Tabatha McGee made that observation on her show “Unveiling Sickle Cell: Beyond the Pain.”
Overcoming the challenges of living with sickle cell disease (SCD) are crucial for achieving a happy and fulfilled life.
Tayo Togba, the founder of the healthcare marketing and consulting company Impact Element Solutions, understands this because she had to from an early age.
Togba is a sickle cell warrior. She was diagnosed at birth and experienced her first pain crisis at 6 years old. She told McGee she suffered through nearly constant crises and was hospitalized repeatedly. So much that her parents, who both worked in the health care field, could not be there. But they helped her find ways to cope.
“My mom would actually teach me ways to manage my health on the phone while I was in the hospital and she was at work,” Togba shared.
“So I started learning things like deep breathing and body scan meditations in the hospital bed because my mom couldn’t be with me. So, they had to find ways to help me live well,” she explained.
Togba carried these techniques into adulthood and now suffers very few crises.
“I had to realize what was sending me to the hospital and kind of learn ways to manage that. … I took the things that she gave me, and I constantly just built on that and that’s how I manage my SCD now to this day. Of course, I still have crises but it’s just not as often,” she said.
One of the techniques her mom taught her that has helped her tremendously is body scan meditations. It involves assessing where the pain is in your body letting the doctors know what you’re feeling.
“Learning my body helped me communicate what I need to my physicians. So that was something I learned early, and it made me a better communicator.”
“You’ve learned how to overcome the challenges of living with SCD,” McGee said.
Togba said she had to realize what was sending her to the hospital and how to manage it. She told McGee she took the techniques her mother showed her and built on them
“And that’s how I manage my SCD now, to this day. Of course, I still have crises but it’s just not as often.”
“That’s the reason for this show “Unveiling Sickle Cell: Beyond the Pain” because we want people to understand it’s not just pain,” McGee explained. “You’ve learned how to overcome the pain by dealing with the challenges and doing the very things your mom taught you how to do.”
Amy Hayes is a community health worker at the Sickle Cell Foundation of Georgia. She interacts with sickle cell warriors like Togba all day every day. You might say she helps warriors in every aspect of their lives from finding food and housing to helping with doctor’s visits and even job searches.
“I listen to them first and I hear what they have to say and then I try to educate them in different ways, locating the resources that they may need, that they probably never heard of before, that we do here at the Sickle Cell Foundation,” Hayes said.
I start out with empathy, just showing love and care to them, not judging them in any form or fashion and letting them know that they are important.”
Hayes told McGee the biggest challenge for those battling SCD is housing because so many lose their jobs over prolonged and repeated hospital stays.
“They need housing. They work. They lose their job because they’ve been in and out of the hospital from having the crisis.”
“It’s very hard for them. … I have a few that really have touched my heart where they didn’t have any place to go,” she explained. “They were trying to come to Atlanta to make a better life and it didn’t happen for them because they were always in the hospital. So, it’s very difficult. It’s very difficult for them.”
But the good news is, there are others like Amy Hayes, community health workers who reach out and give a helping hand to warriors in need.
That’s also what the Sickle Cell Foundation of Georgia is all about.
-By Shelby Lin Erdman