Julius Nelson has lived with sickle cell disease since he was born 27 years ago to his parents Julie and Jonathan Nelson.

“People with sickle cell will tell you we are very good actors because a lot of times we just have to go through life pretending like we’re fine when we’re not,” he said.

There are different types of sickle cell disease and Julius has Hemoglobin SC disease (Hb SC). Hb SC is said to be a milder form of sickle cell disease, but that’s not always true.

“That has not been our experience with Julius,” his mom Julie said.

Julius and his mom Julie are speaking out about what it’s like to be sickle cell warriors and why having a diverse blood supply is so important.

It’s estimated that more than 100,000 people in the United States have sickle cell disease, the majority of whom are Black or African American.

In people who have sickle cell disease, red blood cells are hard and shaped like a crescent. They don’t flow smoothly through the body and the cells have trouble carrying oxygen. The cells can accumulate and harden because they aren’t soft and round.

Patients can have severe pain (episodes referred to as a “crisis”), tissue and organ damage, anemia and even strokes. They may need several blood transfusions throughout their lives to treat symptoms and help manage the disease. Those blood transfusions can increase life expectancy.

Julius has had several surgeries, including operations on his hip, stomach, appendix and eye. Before at least two of his major surgeries he required a blood transfusion so that his blood would be “healthier, stronger blood to make sure that you will be okay through the process,” he said.

In 2021, the Red Cross launched the Sickle Cell Initiative to increase the number of Black blood donors to help patients with sickle cell disease. Julie said the Red Cross means a lot to her because she’s personally seen how it has helped her family.

“When my son was having to have several surgeries, blood was always available and that’s because someone took the time out of their busy day to give blood,” Julie said.

Julie works for the Philadelphia Senior Center and became a blood program leader, working with the Red Cross to host sickle cell blood drives.

“We have been really blessed by our organization to allow me for several years now - I think I started in maybe 2010 - hosting blood drives at our senior centers,” she said.

Her husband Jonathan is a blood donor and Julie wanted to donate but couldn’t, so that’s why she started hosting the drives.

“I wanted to know how I can support the Red Cross if I’m not able to give because I’m anemic,” she said.

One in three African American blood donors are a match for people with sickle cell disease.

“People don’t understand that if you are an African American person the blood is better to come from another African American person to help someone with sickle cell,” she said.

Julius said one of the biggest challenges growing up with sickle cell disease was school and work. “Just attendance. You miss a lot of time when you’re sick often. You often have to work twice as hard.”

He described a childhood full of explaining his disease in terms that people could understand.

“It’s not a disease as well known as things like cancer, or like diabetes,” he said. “I got really used to explaining my disease in the simplest terms.”

He also has had to frequently cope with horrible pain, which required him to be admitted to the hospital.

“I wouldn't wish what sickle cell does to you and the pain you go through on my worst enemy,” he said.

Julie and Jonathan do everything they can to help ease their son’s agony during a crisis, but seeing him suffer is difficult.

“It’s hard to see your child crying out because of pain,” Julie said.

Along with staying in good physical shape and doing all he can to stay healthy, the emotional support Julius gets from his family is one of the things that has helped him the most.

“I was very lucky to have two parents who were willing to do pretty much anything to make sure that I was healthy and could live a normal childhood – as normal as we could get it.”

That support also comes from his beloved sister Jonna, who also has Hb SC disease. Julius said, “When I’m sick, she’ll bring me stuff, she’ll make sure I’m okay and vice versa.”

Jonna is a 19-year-old college student who has had a less severe experience with sickle cell disease. She has been able to manage her pain at home and she doesn’t experience a crisis nearly as often as Julius.

Julius encourages everyone to donate blood.

“You have no idea how that's going to change someone else's life, even if you can't see it. But the important part is that you know that you did your part and that you are helping out your fellow African Americans and making our community stronger and better.”

The next blood drive Julie is hosting, along with the Red Cross and the University of Maryland Eastern Shore Philadelphia Alumni Chapter, is on Juneteenth. Juneteenth is the day that commemorates the end of slavery in the United States. June 19th is also World Sickle Cell Day and falls on a Thursday this year.

The blood drive is from 10 a.m. to 3 p.m. at the Philadelphia Senior Center located at 509 S. Broad Street. You can make an appointment to donate blood by visiting RedCrossBlood.org, using the Red Cross donor app or by calling 1-800-RED CROSS. That’s 1-800-733-2767.

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- Written by Jenny Farley