Low blood supply hinders efforts to treat sickle cells

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Ibrahim Camara is 16. He wants to study at Harvard Law School and one day become a Supreme Court judge. Camara enjoys reading graphic novels and teaching at school such as science and language arts. But after school he is often tired and needs rest, stretched out under a blanket on the couch.

Camara has sickle cell anemia that affects his organs, energy levels, and mobility. There are days when the sickle cell causes extreme pain and discomfort.

“I can’t breathe on a really, really bad day,” he said. “I can’t move without feeling a lot of pain. And everything I do will cause me pain. ”

Camara, who lives in St. Cloud with his mother, brothers, and sister, is one of millions of people who suffer from this genetic blood disorder in which red blood cells are bent like sickles.

These abnormally shaped cells can stick to the walls of blood vessels, causing blockages and reducing the flow of oxygen to organs throughout the body. Patients experience it as fatigue and episodes of extreme pain – called crises. Over time, these crises can lead to organ damage and life-threatening strokes or lung infections.

Camara disease caused avascular necrosis – a condition that resulted in severe damage to his hipbone. He uses a wheelchair to get around.

Black blood donors wanted

Dr. David Mair is the Chief Medical Officer of the Red Cross. Sickle cell anemia, he said, disproportionately affects people of African descent. It is passed down from generation to generation and many people do not know they are carriers of sickle cell anemia until their children are born with the disease.

Patients can have a life-long need for blood transfusions. Mair said a significant portion of the blood sickle cell patients receive comes from the Caucasian population, but doctors are likely to find closer matches that better treat sickle cell patients in need of repeated blood transfusions within the black community.

“Finding a match for these substances on red blood cells is like looking for a match in bone marrow,” said Mair. “You’re more likely to find that kind of match within your ethnic group.”

The Red Cross is trying to triple the number of African American donors in its donation system by the end of 2025.

One of the barriers for sickle cell patients to receive full treatment is the lack of blood donors, Mair said. Donations have decreased during the pandemic.

Earlier this fall, the Minnesota Red Cross Group launched an initiative to find more donors with a blood drive at the Fellowship Missionary Baptist Church in Minneapolis.

Dr. David Hamlar prepares to donate blood during a sickle cell disease blood drive on September 25 at the Fellowship Missionary Baptist Church in northern Minneapolis. Almost 60 people took part in the fundraiser, sponsored by the Church and Omega Psi Phi Epsilon Rho, a black brotherhood.

Brooklynn Kascel for MPR News

“This is a five-year initiative,” said Dr. David Hamlar from the University of Minnesota. He joined others who came to donate blood. “So it’s not just one thing and it’s done. We won’t do that this year and we will stop. “

Among the donors was Ronnie King, dressed from head to toe in purple to represent a partner group of the Black Brotherhood, Omega Psi Phi Epsilon Rho. Black Nurses Rock was also a sponsor.

A group of people move equipment out of a vehicle.

Red Cross workers started a sickle cell anemia blood drive at the Fellowship Missionary Baptist Church on September 25th.

Brooklynn Kascel for MPR News

The Fellowship Missionary Baptist Church fundraiser was a huge success, said James Burroughs, vice president of Children’s Minnesota and a member of the Red Cross board of directors.

He said that black donors appeared in greater numbers at the church’s blood drive than at previous events.

Burroughs knows how important donating blood is to sick people like his daughter Teresa.

“I remember vividly when she was about four years old, she had to be admitted to the children’s hospital and I was out of town and we were [would] say our prayers together every night and her mother had to put her on the phone or videophone and we said it together, ”said Burroughs. “But she was in so much pain because of her sickle cell and the lack of oxygen in her blood. She only cried during her prayers and was in great pain. “

Burroughs said Teresa is now 9 years old and often helps others better understand sickle cell anemia.

“She loves giving hugs, loves talking to people … She always talks about fighting the sickle cell,” said Burroughs. “She knows a lot about it and can explain the disease. But she won’t let that stop her. “

Rae Blaylark is the founder of the Sickle Cell Foundation of Minnesota, one of the Red Cross partner organizations. She said the blood drive was a way for members of the black community to help one another directly.

“We need to be able to not only talk about what makes us all the same as our humanity. But we can also talk about the parts of our ethnicity that set us apart in very beneficial ways, ”she said. “And donating blood, especially for people with sickle cell anemia, is one of those options.”

Camara’s wish

Back in St. Cloud, Ibrahim Camara is waiting for dinner. His mother, Mama Toure, is in the kitchen preparing rice with plantains, eggs, meat and vegetables for Camara and his siblings.

Two children are leaning on their mother in the kitchen.

Mama Toure prepares dinner in her kitchen with her children, 17-year-old Nene Camara, Center, and 10-year-old Madani Camara, in St. Cloud, Minnesota, Thursday, October 18, 2021. Toure and her 5 children all have sickle cell anemia of varying severity.

Evan Frost | MPR news

Toure immigrated from Guinea years ago and works at a local bank. All of her children have sickle cell anemia, but Camara is one of the hardest hit.

Toure speaks French and English while cooking with the children. They shout to Camara, laugh, and ask him to help them translate a French word correctly into English. Camara translates and praises his mother’s kitchen.

“She makes the best rice in the world,” he said.

Then Camara thinks for a moment what he wants when he could have something.

“Money,” he said at first, smiling and joking.

And then he said, “A cure for sickle cells, because if I … [a cure], everyone will get it. Yes. As if the healing of the sickle cells were the greatest thing I could wish for. “

Until there is a cure for sickle cell anemia, Camara and others will continue to need blood transfusions when experiencing crisis. The Red Cross will continue to conduct blood donation drives.

Minnesotans can check their eligibility and make appointments to donate blood using a mobile app or online.

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