By Jenny Farley

At the St. Daniels United Methodist Church in Chester, Linn Johnson unloaded her car from the parking lot. She carried in large heavy jars of tomato sauce and bags of frozen meatballs, ingredients for the hoagies she planned to cook for blood donors.

Working with the American Red Cross, Linn organized the blood drive to help people with sickle cell disease, the most common genetic blood disorder in the United States.

As the outreach coordinator for her church, she is used to feeding large groups. Every Tuesday, she hosts a free lunch for 80 to 100 people. Anybody from the community is welcome.

“If you’re hungry just come grab your meal until it’s done,” she said.

Linn proudly described a church clothing closet, a food pantry and a fundraising drive to raise money for socks and blankets for kids who have sickle cell disease.

“They are for the children that are getting blood transfusions because sometimes they get cold during that process. So, this way they can have a little blanket to put over their feet, or socks.”

It’s estimated more than 100,000 people in the U.S. have sickle cell disease and it disproportionately affects people who are Black.

The disease causes red blood cells to be crescent shaped instead of round, making it harder for blood to flow and cells to transport oxygen throughout the body.

Someone with sickle cell disease may have to get thousands of blood transfusions throughout their life and cope with organ and tissue damage, possible strokes, infections and excruciating pain.

“I have pain every day. Every single day,” she said.

Misdiagnosed as a child, Linn’s parents told her she had rheumatoid arthritis, because that’s what doctors told them.

“They found out no, it wasn’t, it was sickle cell.” She said, “They’ve come a long way in diagnosing sickle cell, and how you can find out if your kids have it by a simple blood test, but back then they didn’t do that.”

As a child, Linn would go weeks at a time without being able to walk because the pain was so bad. At other times, pain meant she couldn’t use her arms. Her parents didn’t get much sleep so her uncles would arrive to help.

“They would come over and help try to rub my arms. I’ll never forget it. They would be tired and I would be tired, but I couldn’t sleep because I was hurting.”

Linn has had a shoulder replacement, hip replacements and nearly died more than once.

“In 2000, I ended up on life support for an entire week, because I had a really bad sickle cell crisis and it affected my heart. But with the will of God and the doctors and the nurses I was able to come out of that and ended up staying in the hospital a couple of months.”

Linn credits Dr. Lee Bogart with helping prolong her life. She said, “Second to the Lord, he’s my savior.” Dr. Bogart is a hematologist and oncologist who has treated Linn for more than 40 years.

It’s clear their relationship is special. He came to donate blood, “Because she asked me,” he said.

So what’s it like treating patients with sickle cell disease? “Very challenging. We wish we had more tools in the toolbox.”

Dr. Bogart said there are some new things coming along to treat sickle cell disease, like bone marrow transplants and stem cell therapy, but not everyone is a candidate. He added, “So, we try and manage symptoms, basically.”

Blood transfusions help sickle cell warriors treat symptoms and complications of the disease. Linn has lost track of how many she has received. “Too many to count,” she said.

Phlebotomist Krysten Brown has worked for the Red Cross for about 9 months and wants blood donors to know how much they are appreciated.

“It’s a beautiful thing for people to come out and to come do this thing that will impact so many lives because it’s so important, especially for Black African American kids who do have sickle cell.”

Nadira Taylor came to the blood drive to try and donate for the first time. She works for a community health organization and was thinking about her late cousin.

“I’m also here because my relative passed away from sickle cell four years ago. He was 25 years old.” She said, “He had episode after episode, and his last episode, he just didn’t come out of it.”

For Linn, the pain from sickle cell disease has been the hardest part, but she doesn’t let it keep her from living. She has two children, four grandchildren, and she works as a substitute teacher for children with autism, along with her volunteer work.

She pushes through the pain.

“You have to. You have to survive.” She said, “Some days you don’t want to get out of bed but I push myself because I know that there’s somebody out there that needs my help. Especially the kids.”