With one in thirteen Black babies still being born with the sickle cell trait, a need still exist for the Uriel E. Owens Sickle Cell Disease Association of the Midwest. Since 1980, the organization has worked to educate the community about sickle cell disease and provides services to those who suffer from it.

They provided free information about sickle cell to the community and offer services to those who suffer from the disease, including: counseling, education, emergency assistance for food, prescriptions, and utility bills, referrals, and college scholarships.

Although the organization has survived for nearly four decades, tight financial times are making it increasingly difficult for the organization to provide the services that are so badly needed.

Community Activist and Visionary

Uriel Owens suffered from sickle cell anemia, but it didn’t stop him from working tirelessly in the community. He was a civic leader in KCK and helped establish the Juniper Gardens Children’s Project, a literacy program for residents of the housing project, which was overwhelmingly filled with Black tenants. He was also director of the Economic Opportunity Foundation, an organization that combated poverty in Northeast KCK.

Owens’ activism wasn’t surprising. He came from a family of activists, including his brother Chester Owens who was KCK’s first Black City Council member. Uriel often expressed a need for an organization that would help sickle cell patients and their families, and when he passed away in 1980, his family asked friends and well-wishers to donate money instead of giving flowers. His family used the funds to start the organization he often talked about with the organization opening its doors the very next year.

Today, the organization is run by Eric Kirkwood, Uriel’s nephew. Like Uriel, Kirkwood has sickle cell. He knows firsthand how painful and debilitating the disease can be, so he’s the perfect ambassador to lead the organization.

What is It?

Sickle cell anemia, or sickle cell disease, is an inherited condition affecting red blood cells. Normal red blood cells are round and flexible and carry oxygen and nutrients throughout the body, and they easily flow through blood vessels. Sickle cells are shaped like sickles or crescents, and they are rigid and sticky. When attempting to pass through tiny blood vessels, these abnormally-shaped cells bunch together, blocking blood flow, depriving parts of the body of oxygen and nutrients, and causing swelling and excruciating pain.

How is it Acquired?

You need two sickle cell genes, one from each parent, to contract sickle cell. If one parent has a sickle cell gene and the other does not, you will not inherit it. However, inheriting a sickle cell gene means you have the sickle cell trait and are a carrier. If you carry a gene and have a child, and the other parent does not have a sickle cell gene, the child will not have the disease. But there is a 50% chance the child will inherit your sickle cell gene. If you carry a gene and the other parent does too, there is a 25% chance the child will be born with sickle cell disease.

Executive Director

Kirkwood, 57, says sickle cell affects people differently. “Not everybody’s the same with sickle cell … and not everybody’s going through the same thing at the same time.” Some have painful episodes several times a year or more while others only have one crisis a year. A pain episode or pain crisis, caused by insufficient blood flow (and hence a lack of oxygen) to a part of the body, is the distinguishing characteristic of sickle cell anemia according to Kirkwood. When asked to describe a crisis, he says, “It’s just really painful—there’s nothing that can describe it.”

Financial Need

Kirkwood, who emphasizes the organizations need for financial assistance, says the association accepts donations from individuals, organizations, and companies.

“We do need funding to help keep the things going,” he says. “It’s difficult times for non-profits right now, and we’re … having a rough time. If you can [get] the word out there, let people know that we’re still here, [and] we still help people.”

When asked what one message he wants readers to remember, he stressed the importance of knowing if you carry the sickle cell gene: “I recommend that people check their trait status if they plan on having kids. I just met a couple that had triplets—two of the babies had sickle cell disease.”

The association is located at 444 Minnesota Ave., KCK. They can be reached by telephone at 913-735-2622, or visit their website, www.sicklecellkck.org.

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