Claudia Peschiutta
GLENDALE -- Dr. Frieda Jordan has gotten several calls over the years
from Armenian parents around the world desperate to find a bone marrow
donor match for a dying son or daughter.
Names of those children, none of whom she was able to find a match
for, are etched in the Glendale woman's memory as they may be on grave
markers.
"It makes me feel very frustrated that we could have done something
for them but we didn't have the facility to do it," she said.
Jordan, associate director of HLA and Immunogenetics at Cedars-Sinai
Medical Center, has for years been working to help patients with leukemia
and other blood-related diseases find compatible bone marrow donors.
Experience has taught Jordan finding a donor match is more difficult
for minorities, such as her fellow Armenians.
"It has been proven scientifically that Armenians have got a unique
genetic makeup," she said. "Very often, we would not be able to find a
match for any Armenian patient."
Dr. Sevak Avagyan has known the same frustrations.
As the former deputy health minister of Armenia, Avagyan has met many
patients unable to find compatible donors.
Hoping to facilitate the search for Armenian patients around the
world, Avagyan, Jordan and Alvart Petrossyan, a member of the Armenian
Parliament, founded the Armenian Bone Marrow Registry Charitable Trust in
June 1999.
FINDING DONORS
Robin Parks, a coordinator for the American Red Cross Marrow Donor
Program, said there are more than 3.9 million bone marrow donors
registered throughout the U.S.
On any given day, there are about 3,000 patients around the nation
searching the registry, she said.
"It's rare to match a patient but it happens," Parks said.
Since 1987, the program has provided 9,434 transplants. Less than
1,400 of those went to minorities.
It is unknown how many bone marrow donors are Armenian because they
are grouped with other Caucasians.
Jordan said the number must be low.
"It's the lack of knowledge that puts them off," she said.
Parks agreed that donor education is needed among minority groups.
"There are certain do's and don't's in their cultures," she said.
OVERCOMING FEAR
The thought of becoming a bone marrow donor might sound a little scary
to those who don't know much about the procedure.
"People are scared of something they have no clue about," Avagyan
said. "That's natural."
But becoming a registered donor requires no more than a small blood
donation and Avagyan said it is a rewarding experience.
