Frieda Wooley may not look like she has a serious illness. But she’s just one small cut from her life slipping away.
That’s because Wooley has Bone Marrow Failure Syndrome, a condition that keeps her blood platelets low and makes her prone to excessive bleeding.
“I nicked myself with a pin one day and my blood just was running like water,” said the Columbus resident who is now in Texas under the watchful eye of physicians at MD Anderson Cancer Center. “If I get in any kind of accident or wreck, I won’t survive it. Even if my knee hits a dashboard, I’m doomed.”
Wooley, 56, needs a bone marrow transplant, but doctors haven’t been able to find a match within her family. So, local friends will hold a bone marrow donor registry drive 10 a.m. to 3 p.m. Tuesday at Columbus Technical College, 928 Manchester Expressway.
The drive is being coordinated by WRBL News 3 Anchorwoman Teresa Whitaker, who is also the station’s HealthWatch reporter. Whitaker said she and Wooley are friends and she wanted to do something to help. When she found out Wooley needed a transplant, she contacted Rod Gunn, a community engagement representative for Be the Match, a Minneapolis-based non-profit organization that helps patients find donor matches.
“I found out that my best friend, my prayer partner, my sister and my fellow soprano in the choir needed a bone marrow transplant and I immediately called Rod and said, ‘What can we do?’” said Whitaker, who attends church at Spirit Filled Ministries, where Wooley is also a member.
Gunn said the registry is limited to people who are ages 18 to 44, which doctors believe is best age range for finding a match. People who register will have to provide contact and health information. A swab cheek sample will be taken to determine tissue type, which is used to make the match. People older than 44 can register online at bethematch.org, but they will have to pay $100 for the tissue test.
Gunn said Be the Match has a registry of about 11 million people, but finding a match for African-American patients like Wooley is difficult because there aren’t enough black donors.
“African-Americans only make up 7 percent of the marrow donor registry and so we’re holding this marrow drive in an attempt to add more African-Americans to the registry and to give Frieda and other African-Americans a better chance of finding a matching donor so they can receive a life-saving transplant,” he said.
To put it in perspective, he said, a white patient has a 97 percent chance of finding a match. For African-Americans and other minorities, the chances are more like 76 to 90 percent. African-Americans have the lowest odds out of all races, Gunn said. He blames the lack of minority donors on mis-education.
“Many people hear that it hurts or think when they donate they’re going to lose something permanently, which are all myths,” he said. “Education is the key to adding more people to the registry.”
He said one of the main things preventing people from donating bone marrow in a city like Columbus is the large military population. Many people don’t participate because they’ve heard that people who have spent time in Europe or the United Kingdom may have been exposed to Mad Cow Disease and shouldn’t donate blood. But that doesn’t apply to bone marrow donations, he said.
On Tuesday, he hopes to register 300 people.
Gunn said people who register are simply making themselves available to potentially save someone’s life. Only one out of every 500 people listed on the registry is ever identified as a match and go on to donate.
Wooley, a native of Louisiana, said she moved to Columbus in 1999 with her husband, who retired from the military. She found out about her low blood platelets during a routine physical at Fort Benning.
For five years, local doctors couldn’t figure out what the problem was, she said. A year ago, they referred her to MD Anderson in Houston, where the condition was finally diagnosed.
Wooley said she has five siblings. Three were tested but didn’t match and two couldn’t test because of heatlh reasons. She said her four daughters have entered the registry, along with other relatives.
Since plans for the registry drive started, she’s been receiving e-mails from people all over the country wanting to donate, she said. Many found out about her case on the Be the Match and WRBL websites.
Wooley said she’s grateful for what Whitaker and everyone is doing and she’s hopeful for the future.
“To have survived this long, they say it’s a mystery even to the doctors,” she said. “Of course, I count it all joy onto God that I was kept in the midst of these five years.”