One Woman’s Personal Battle To Find Latino Bone Marrow Donors
By Linda Tishler Levinson
Joan Luna Zayas has spent much of her life serving others. Now, as Zayas battles leukemia, her family and friends are helping her continue to help others, this time in educating the Latino community about the need to register as bone marrow donors.
“I’ve been helping people all my life,” she said, so it is nice to see the reaction from the community rallying around her now.
Zayas, 52, of Meriden, CT, worked in social services beginning in the late 1980s. She was the executive director of the Spanish Community of Wallingford from 1988 to 1993. She also has worked in the WIC Office of the Meriden Department of Public Health and Human Services and at Kuhn Employment Opportunities Inc.
After layoffs forced her to leave social services, she worked in real estate. But in March, shortly after beginning her new job, Zayas was diagnosed with chronic myelogenous leukemia. Her condition at first responded to medication, but in August she went in for routine blood work. The disease, which attacks healthy blood cells, had worsened. Her doctor told her to go to Yale-New Haven Hospital, where on Sept. 2 she began chemotherapy.
She continues to get chemotherapy once a month, but her doctor has told her she needs a bone marrow transplant. With siblings being the most likely matches, her sister was tested, but is not a compatible donor. The search for a suitable donor began through the national Bone Marrow Registry.
On Nov. 16, a bone marrow drive in Zayas’ honor was held at St. Rose of Lima Church in Meriden, where she is a parishioner. The drive raised close to $4,000 through bake sales and raffles, as well as adding 102 new donors to the registry.
Still, no match has been found and unfortunately the lack of a match is not unusual for Latinos.
“Latino and Hispanic patients can have a harder time finding a donor than other patients. Patients are most likely to match people who share their heritage. Today, fewer than 940,000 (only 10%) in a registry of 11 million members are Hispanic or Latino heritage,” said Patricia Fernandes, a recruiter for The Icla da Silva Foundation the largest recruitment center for the Be The Match Registry in the United States.
Meanwhile, Zayas doctor is giving her two month to find a donor, at which time a core transplant will be done. The complex procedure cannot be done in Connecticut, Zayas said, so she would need to travel to New York or Boston.
“The Latino/Hispanic community has a very diverse set ancestry, which leads to many different and sometimes rare Human Leukocyte Antigen typings,” Jennifer St. Peter, account executive of the Be the Match Registry, said earlier this year. “Someone who identifies as being Latino/Hispanic may have a combination of ancestors from South or Central America, Europe or Africa.”
HLA typing is used to match patients and donors for bone marrow or umbilical cord blood transplants. The HLA type is inherited from each of a patient’s parents, so each sibling who shares the same set of parents has a 25 percent chance of matching a sibling who is searching for a donor.
However, nearly 70 percent of all patients in need of a transplant do not have a match within their family, according to the National Marrow Donor Program. They reported that more than 12,000 U.S. patients annually are diagnosed with life-threatening diseases such as Lymphoma and Leukemia that require the use of marrow for the best chance at a cure.
“There are many ways you and your organization can help Joan Zayas and many other Hispanic patients. You can host a drive and engage your community by providing the opportunity for them to join the registry and maybe be a match for this mother and grandmother who loves to travel and enjoy her family,” Fernandes said.
Those interested also can organize volunteers and raise money to help add registry members and assist patients with transplant costs.
“It is imperative that more individuals enter the registry to allow more patients the opportunity for a cure,” Jean Montano, executive director of the Connecticut Chapter of the Leukemia & Lymphoma Society, said earlier this year.
To sign up for the registry, go to http://join.marrow.org/patricia9.
Icla da Silva Community