Shining the Light on Sickle Cell

Mark Thomas, Regional CEO of the American Red Cross of Wisconsin, left the Sickle Cell Awareness Blood Drive at the Urban League of Greater Madison energized and inspired by what he witnessed. High numbers of Black men were rolling up their sleeves to give the gift of life.

Thomas is on a mission to educate and recruit Black Americans to become blood donors. He said Madison’s Sickle Cell blood drive will serve as a roadmap of success. African American churches, members of the Divine 9 and civic groups across the city teamed up to make it happen.

Crowds of donors stretched to the parking of the Urban League’s Park Street location, while adhering to Covid-19 safety measures. A DJ played R&B music and trays of fresh fruits, granola bars and bottled water were on hand. It felt like a party with a purpose. 

“I tell you this, what has been accomplished here can be replicated all over the country,” said Thomas, a Southeast Wisconsin native. “We’re only six months in since we’ve launched our initiative and this one is going to go down as one of our biggest and largest successes to date. And I know that we’re going to be able to take this and our learnings from this and be able to use this elsewhere.”

The American Red Cross nationally collects 40% of the nation’s blood. A mere 3% of those donations comes from people of African descent. A dire blood shortage reached its peak amid the Covid-19 pandemic, Thomas said. And the hurtful legacy of the Tuskegee study deters many Black Americans from volunteering to give blood.

“A successful blood drive, for us, is 30 units or more,” Thomas said. “We look like we’re on pace to do probably over 50 units of blood today. But in particular, especially being an African American male, to come here and see other African American men making donations is just personally very gratifying to me. You could go all over the country to a blood drive, like San Francisco or New York, and it’s rare to see four or five Black people donating like we do here at the Urban League.”

Adrian Jones and Martin Lackey share in Thomas’ excitement. Both battle sickle cell. It’s a battle they feel they had to fight alone. It’s exhaustive and brings on bouts of loneliness and anger because the illness is often misunderstood. 

Sickle cell disease is a chronic condition that affects hemoglobin, the protein in red blood cells, and causes a person’s red blood cells to be misshapen. Instead of smooth, round and flexible, the cells are stiff and shaped like a crescent. When this happens, the cells can get clogged as they travel through veins and arteries, which can lead to complications such as extreme pain, severe lung problems or strokes. Additionally, sickle cells only live for about 15 days, as opposed to up to 120 days for healthy cells. As a result, people with sickle disease also suffer from severe anemia, a decrease in red blood cells in the body.  

In the United States, approximately 100,000 people have sickle cell disease, which disproportionately affects people of African and Hispanic descent. One in 12 Black Americans carry the sickle cell genes.

“The sickle cell community in Dane County is really isolated, especially for adults,” Jones explained. “So, for me as somebody with sickle cell SE, I’m lucky that I haven’t had a blood transfusion. But my mom who has sickle cell SS, blood transfusion is what kept her going. There were so many times where my mom would have to sit there in pain and wait like six hours or sometimes even 24 hours just to get a blood transfusion because there was a blood shortage.”

Her mother, Deborah Adekola, passed away in June 2019. 

Jones says she has mild joint pains now. She watches her diet, water intake and she takes liquid chlorophyll daily to increase oxygen to her red blood cells and build healthier cells. In high school and college, she endured steroid injections on both sides of her hips to attack bursitis. And after giving birth to her daughter, Jones said getting out of bed was unbearable. All effects of the sickle cell disease.

“It would hurt to just get out of bed or to roll over,” said Jones. “Imagine being a new mom; you’ve just given birth, you’re dealing with things like postpartum depression, you have a newborn and then it hurts to move. But you can’t do that to your own child. It was one of those things where you just push through it.”

Jones’s husband and their two daughters each have sickle cell traits.

When Lackey was old enough to start crawling, his mother noticed a bit of a limp in her son’s efforts to get around. He’d even hold his leg because of the pain throbbing inside. His mom immediately identified the problem. He was suffering from sickle cell, just like his sister who was 10 years older than him.

“I’ve been going in and out of hospitals my whole life,” said Lackey, who is raising his four children and two nephews after his sister died. “I’m in constant pain. I deal with it all day. I’m in the hospital three to five, on average, a year. And I stay on oxygen at home. All of my kids are traumatized from it.”

Lackey brought the idea to have a blood drive to the Urban League’s president and CEO, Dr. Ruben Anthony, and provide educational materials to the community.  Anthony agreed.

“Most of my life I’ve kept this illness to myself because it feels like no one really cares,” Lackey said. “I don’t feel like there’s any advocacy for it. We have to bring awareness to what’s going on and let people know that this is a problem, and it’s a Black issue. We can’t solve the issue if we don’t address it first.”  

Quick Facts About Sickle Cell Disease:

• Sickle cell disease (SCD) is a common, inherited red blood disorder. Throughout their lives, SCD patients can suffer a range of disabilities, including acute anemia, tissue and organ damage, terrible pain and even strokes. Red blood cells carry oxygen to all parts of the body through a substance called hemoglobin.  Normal red blood cells are soft, round, and can squeeze through tiny blood vessels.

• People with SCD have red blood cells that contain mostly hemoglobin S, an abnormal hemoglobin type.  These red blood cells are stiff, distorted in shape (like a sickle) and sometimes block small blood vessels.  This is what causes the complications of SCD and why blood transfusions from people with healthy red blood cells can help.

• You can’t catch SCD, but for patients born with it, there is currently no widely used cure.

• Depending upon the patient and severity of symptoms, SCD may be treated in a variety of ways.  The Red Cross supports one of the most critical sickle cell treatments of all – blood transfusions.