Growing Glendale group supports sickle cell warriors

By Richard Smith
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A support group to assist with what can often be a lonely battle against sickle cell anemia started meeting a year ago in a side room of a downtown Glendale church.

It started mostly because of a summer 2024 seminar Glendale resident Rev. Marcia Garland — who does not have the blood disorder — could not get out of her mind,

Garland also is the founder of the Black Business Owners Coalition of Glendale.

“I got introduced to the sickle cell community as a result of being invited to an event that was hosted by Vitalant. I left the meeting quite confused because I thought sickle cell had been cured,” Garland said in December 2024. “There was so little being said around it. The community has gone completely underground and is coping as best it can.”

On Aug. 25, Garland filed Glendale Sickle Cell Support Group LLC with the Arizona Corporation Commission. It was a bit less than a year since the group’s first meeting.

Incorporation also occurred less than a week before September, which is Sickle Cell Awareness Month.

As she began to contact people interested in the group, they learned that the only sickle cell support group in Arizona was in Tucson.

The Glendale group had its first meeting in September 2024, and continued gathering on the fourth Wednesday of every month at Mount Zion Prayer Ministries International Church, 7025 N. 55th Ave.

Meetings can have up to 15 participants and about half of them log in on Zoom.

“We’re just growing and ballooning since that time, so we’re excited,” Garland said. “We have a wonderful combination of warriors, family members and the community.”

The group includes Tucson resident and sickle cell warrior Akilah Gilbert, and sickle cell survivor Nikita Toney of Phoenix. Caleb Afanou, a teen from Tolleson battling sickle cell, attends with his dad, Kuoami, when he can.

The early contact with Vitalant proved vital. Katrina Eaton, senior account manager at Vitalant, is the linchpin of the group, connecting members with medical resources and learning their stories.

“Especially around this time of year, there’s such a great need because the next two weeks is the highest usage for blood for accidents and traumas,” Eaton said during the Dec. 18, 2024 meeting. “That really puts a strain for our sickle cell warriors and patients that need blood consistently.”

Sickle cell disorder is still far more frequent among African Americans at more than 90% of the cases in the United States, though an estimated 3-9% of the cases are those of Hispanic or Latino descent, according to the Centers for Disease Control and Prevention in 2024.

Other numbers are not favorable for those with the disease.

The National Marrow Donor Program, formerly Be The Match, statistics show only 8 percent of the potential donors on its registry are African American.

NMDP Member Recruitment Coordinator Lindsey Couts was the special guest at the Glendale support group’s July 23 meeting.

Beyond the registry, this organization focuses on education, awareness search for potential donors’ tissue antigens. Keeping the information kept private is a top priority along with donor safety.

“We’re a non-profit organization so we also don’t share your information with any outside organization,” Couts said. “It could be months or you may never get called. It depends on if your person — I like to say your doppelganger or tissue twin — needs you. Then we will contact you.”

She said there are two ways to donate. One is similar to a power red blood donation. Instead of collecting blood, NMDP is collecting stem cells. Marrow donation occurs about 10 percent of the time.

Marrow is drawn from hip and recovery takes two to seven days.

“A lot of times when we get patients that have sickle cell, they have pain crises. This is one way we can actually cure them from their sickle cell disease. We have to find them a matching donor,” Couts said. “We work to find a sibling match, but 70% of the time patients don’t have a match in their family. Then they come to us and say they need a complete stranger to come and donate some of their healthy cells.”

The disease causes cells to die early. A shortage of healthy red blood cells is called sickle cell anemia.

Red blood cells also can contort into a sickle shape and block blood flow causing intense pain, a sickle cell crisis.

Blood transfusions are common for patients. A lot of patients NMDP serves need blood donors in the meantime while hoping for a marrow match.

“We’re very thankful for Vitalant,” Couts said. “We try to collaborate to save patients who need blood and stem cell and marrow donations.

NMDP also has a peer connect program to guide patients through a transplant by talking to someone who already had it, providing emotional support for patients and caregivers.

The group also publishes a YouTube podcast called Black Blood.

“We have a need for people to join the registry, but education ad awareness is huge for us,” Couts said. “Especially with medical mistrust. With sickle cell patients and other patients, their doctors don’t always understand the pain crises they’re going through. It can be very difficult.”

Glendale Sickle Cell Support Group spent its first year making connections beyond Vitalant and NMDP.

It is involved with the Arizona Blood Alliance, the Sickie Cell Foundation Of America, Phoenix Children’s Hospital and Dr Amina Simmons from Paradise Valley Community College.

Simmons organized a sickle cell walk that is partnered with Vitalant.

“We are clothing and finance. We are layers of support,” Garland said. “It’s what are you doing for your community. What are you doing to give back.”

Richard Smith
Senior News Editor | Glendale & West Valley Preps

rsmith@iniusa.org

Richard Smith has been with Independent Newsmedia since 2016, and worked at a Sun City-based news outfit covering the Northwest Valley for 22 consecutive years.

An NAU alum and lifelong Arizona resident, Richard began as a copy editor and page designer at Surprise Today and the Daily News-Sun, then rekindled his love of sports writing by taking the reins on West Valley Preps in 2008.

For most of the mid-2010s he was the Surprise editor and West Valley Preps reporter. Now he’s the West Valley Preps Editor and Surprise Associate Editor.

As COVID restrictions slowly lift, Richard is cautiously optimistic he will visit book stores, football fields and gyms again this fall.