Taking the fight to sickle cell

By Michael Kinney 

Allen Russell remembers exactly where he was the first time it happened. While his mother tells him he had other episodes, he has vivid memories of the moment he understood what type of impact sickle cell anemia was going to have on his life.  

“I was a sophomore at Lawton High, coming back from a football scrimmage at Mustang. I was sitting on a bus and out of nowhere, my heart just starts racing pretty bad,” Russell recounted. “I just started hurting bad all over, never experienced anything like that before. When I got to the hospital, my heart was beating like 180 beats per minute. Then my body was just in so much pain. I never forget my coaches at the time were trying to keep me calm on the bus. I was just so scared and I thought was about to die. I mean, it was the worst, the scariest time of my life.” 

From that moment on Russell’s life has been a constant battle to contain the effects of the sickle cell disease. While it has not been easy, the 34-year old Putnam City West assistant basketball coach now wants to help others who have to endure the same issues.  

In October of 2020, Russell helped create the Sick of Sickle Cell (S.O.S) Foundation with Lenny Bert, Marques Warrior and Jessie Brown. The non-profit 501(c)(3) is aiming to bring awareness to a disease that has gone unnoticed in most mainstream communities, according to Russell. 

“I started it because it’s something that I deal with every day. Having sickle cell anemia, sickle cell disease, just being in pain all the time,” Russell said. “You don’t hear about it like you hear about cancer or stuff like that. It’s something that affects the African-American community way too much. So why not start something that could help people by just bringing awareness to that?” 

According to Russell, who was born and raised in Lawton, even most of his friends have no idea what sickle cell anemia is or what it does to the body. 

“I just want people to be aware of what people with sickle cell anemia go through every day,” Russell said. “How they are treated when they go to the hospital from doctors or even nurses, because they think that you just want drugs or something like that. But you are actually in a lot of pain, and there’s nothing you can do about it.”

Sickle cell anemia is one of a group of disorders known as sickle cell disease (SCD). It’s is an inherited red blood cell disorder in which there aren’t enough healthy red blood cells to carry oxygen throughout your body. 

Because those with SCD have red blood cells that are shaped like crescent moons instead of round, they can get stuck in small blood vessels. This can slow or block blood flow and oxygen to parts of the body.  

According to the Centers for Disease Control and Prevention (CDC), sickle cell disease affects approximately 100,000 Americans and occurs among about 1 out of every 365 African-American births. The CDC also says about 1 in 13 Black babies are born with the sickle cell trait. 

It’s a lifelong disease that can load to carry financially as well. A study in 2015 estimated the average cost per patient-month at $1,389, with a lifetime cost of care of approximately $460,000 per patient with SCD. 

While sickle cell disease can be cured in some patients with bone marrow transplants, sickle cell anemia has no cure. But there are treatments to relieve the pain. 

“I go every four to six weeks to do what they call a blood replacement,” Russell said. “What they do is they take out bad blood and replace it with good blood. So it helps me feel a lot better. After my treatments, I have a lot more energy because it’s a lot more red blood cells that are normal cells, that they are replacing the sickle cells with.” 

Yet, even with the blood replacement, that doesn’t guarantee those with the sickle cell disease are home free. Russell has been rushed to the hospital many times after having episodes pop up on him. 

“An episode for me is a pain crisis. Sometimes I wake up out of my sleep and I’m in just excruciating pain,” Russell said. “My chest, my legs, to the point where I can’t really move. My mom and dad used to have to help get me to the car and get me to the hospital because my body’s in so much pain. I’m just hurting all over. Feels like somebody literally got a knife and just stabbing you over and over and over. There’s nothing you can do about it. Nothing.” 

The bedrock of the S.O.S. Foundation will be the Sick of Sickle Cell High School Showcase. It’s being held for the first time Nov. 27th-28th at Putnam City West High School.  

Several top boys and girls’ high school teams from Oklahoma and Arkansas will be on hand this first year. Organizers plan to make it even bigger going forward.

“We will donate proceeds to the National Sickle Cell Foundation to help find a cure for the disease,” Russell said. “We’re also raising from donations and we will those as well. We want to definitely grow the basketball tournament. It allows us to talk to more people and let them know what sickle cell is. And just bring them or give them an awareness of how it affects the community.” 

Russell is also handing out an annual scholarship to someone who has the sickle cell disease or a family member who has been impacted by it.  

”I am personally going to donate $1,000 to someone who is either dealing with sickle cell anemia or who is affected by it in some way,” Russell said. “Just because you don’t have sickle cell anemia, doesn’t mean you are not affected. You may have a brother, a sister or a cousin or a family member that has it and you affected by it as well.” 

Bert, who had a 29-year old niece die from the disease in 2010, will also be handing out a scholarship. It will be going to a family that has been affected.  

Both will be annual scholarships and Russell says they will be handed out at the S.O.S. Showcase.
At the end of the day, Russell and the S.O.S. Foundation want to bring attention to a world most people know little about.

“People don’t even know what it is. It’s just something that I’m passionate about, I deal with,” Russell said. “That’s why I started it.”

Michael Kinney Media is a Freelance Writer/Content Provider

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