BONE MARROW REGISTRY
Former D.C. First Lady Steps Into Spotlight for Awareness
Monday, May 28, 2007
Effi Barry is well known as the District's former first lady, the stoic woman behind Mayor Marion Barry during one of the stormiest chapters in the District's political history.
Nearly two decades after the controversies and turmoil surrounding her former husband's mayoral tenure, Barry is using her battle with leukemia to wage a public campaign to encourage more African Americans to be part of the registry for bone marrow transplants.
"My idea was to bring awareness to a very serious health issue. I am not here for pity," Barry said. "Whenever you face adversity, you use it as an opportunity. I see this as an opportunity because, had it not been for the kindness of the people of the District, I would not still be alive today."
Barry, who is a program director for the D.C. Health Department, is scheduled to undergo a bone marrow transplant June 15 at Johns Hopkins Hospital in Baltimore.
"When it comes to donating organs, there are a lot of misconceptions out there in the African American community," said Barry, who attended services yesterday at St. Timothy's Episcopal Church in Southeast Washington with her mother and Rocky Twyman, who works with the National Marrow Donor Program.
Barry said that speaking openly about her illness is her first step in raising awareness about the need for donors. She plans to be more active after her transplant by speaking to groups and starting a scholarship fund for health-care students.
"I just want to be part of a crusade," she said, "to get people more educated and more concerned to say, 'Yes, I will be an organ donor.' "
Twyman said he will use her name and image during bone marrow drives to generate interest. "Associating her name will really help the cause," he predicted.
The National Marrow Donor Program says black people represent just 8 percent of donors on the program's registry, although they make up more than 12 percent of the country's population. "The disparity is alarming because, in 90 percent of bone marrow transplant cases, patients find a suitable donor among their own race," according to an article on the program's Web site.
That disparity results in black leukemia patients having a much more difficult time finding donors.
Barry learned she had leukemia after going to the Howard University Hospital emergency room in February 2006 thinking she was suffering from a sinus infection. At one point, her condition got so bad that she was hospitalized in isolation for more than a month.
"From February 6 to March, I was in ICU," Barry said, adding that during this period, Marion Barry, now a Democratic Ward 8 D.C. Council member, at times remained all night at her bedside. "This is a life-altering experience. I am kept alive because of the kindness of other people."
She lost her hair during her treatment, yet she seems more willing than ever to step into the foreground to bring increased awareness to the need for organ donors.
"Hair doesn't make the person. I am not embarrassed, because there is nothing to hide," Barry said. "If people look at me and they see I don't have hair, it is an opportunity for me to educate people about the disease. The appreciation of life is more than the trappings that you might have. Every day I live is a celebration."
Barry said that even though she has undergone months of chemotherapy and blood transfusions, her best hope for recovery is a bone marrow transplant. Her mother has agreed to be the donor.
"There is nothing that a mother wouldn't do for their child," said her mother, Polly Harris. "Through it all, I have always been in the background, holding her hand. She could depend on me."
Twyman said those interested in learning more about the marrow donor program can call 800-MARROW2.
Staff writer Michael Tunison contributed to this report.