Courtesy By: tennessean.com
Cam and Rusty Chittaphong update a family Web site to reach out to the local Asian community for their sick daughter.
The Tennessee Chinese News publicized a recent bone marrow drive for the 7-year-old Laotian girl. Fliers and e-mail blasts with Angel Chittaphong’s story circulate at Nashville-area temples, churches, nonprofit organizations and other groups about her rare blood disease, alpha-thalassemia.
Her red blood cells won’t circulate oxygen to her organs, and she gets transfusions with healthy cells to keep her alive. She needs a bone marrow transplant — and it’s likely that a match will be found only in an Asian donor.
“Minorities are the hardest to find matches for bone marrow,” said Tom Burton, executive director of AGAPE, a family service agency for Middle Tennessee. He has organized more than 30 bone marrow drives since 1996 as a volunteer.
Despite growing minority populations in Middle Tennessee, the Chittaphongs are facing an obstacle not exclusive to Asians. Cultural differences, language barriers and a lack of education can hinder minority groups’ awareness about health issues. access to resources and, in the Chittaphongs’ case, ability to find a donor.
African-Americans, American Indians, Asians and Hispanics are among the ethnic groups that have the toughest time finding donors, Burton said.
According to the National Institutes of Health, minorities make up about 20 percent of the bone marrow donor registry, while minorities account for about 40 percent of the transplant waiting list.
“We get the largest response when we go somewhere that is a natural gathering place for them,” said Burton, who helped organize a drive for Angel at Lipscomb University in April. He held a drive at Tennessee State University for a patient who was African-American.
The Sumner Hispanic Alliance hosts an annual Latin Festival at Volunteer State Community College in Gallatin, where the health department is invited to educate Hispanics on different topics, said Cristina Frasier, chairwoman of the Sumner Hispanic Alliance, who owns a translation business for non-English speakers.
The group also visits soccer fields, popular spots for Hispanics. But the people must be comfortable with those offering information.
“There are trust issues,” Frasier said. “It is more effective when someone who speaks their language and looks like them gives the information.”
More education needed
Dr. Haydar Frangoul, director of the pediatric blood and marrow transplant program at Monroe Carell Jr. Children’s Hospital at Vanderbilt, said minorities might not understand what is involved in bone marrow donation because they haven’t been educated. To join the donor registry, a person has to give a swab of his or her mouth. The donation procedure takes about an hour, and recovery is about two days.
“Unfortunately, bone marrow donors have been lumped in with the solid organ donor community,” Frangoul said.
Angel has been on the transplant list since she was born. Three blood and bone marrow drives have been held for her in the past year. Hundreds of people came to each, but the majority were Caucasian donors.
Her disease is a genetic disorder traced to Southeast Asians. Cam Chit taphong lost her first baby at birth because he had the disease, but she did not know it.
With Angel, doctors did two experimental in-utero blood transfusions that worked. Angel had to be delivered early — at 28 weeks — and weighed a little over 2 pounds.
“I knew she was a fighter then,” Cam said, glancing at her daughter. “The doctors were laughing because she was playing with the needle and they had to sedate her to finish the transfusion.”
Last week, Angel was ordering her brother, Jacob, 6, to turn on The Wizard of Oz, her favorite movie.
“I have a Dorothy doll,” Angel said, pointing to her Dorothy and Toto figurines.
Angel is feeling well. She had a blood transfusion Tuesday as part of the daylong regimen that she does every four weeks and will do until she finds a bone marrow match.
“Very few patients have survived beyond birth,” Frangoul said. “This disease is not compatible with life.”
He said the body can eventually reject the transfusions or there can be an unhealthy buildup of iron.
“If she gets a transplant, she will be cured,” said Frangoul, who has been Angel’s doctor since the girl’s birth.
Frangoul said the most recent, reliable number he had on children living with alpha-thalassemia was 11.
Cam Chittaphong is working with leaders of the Asian community to print information in different languages about bone marrow donation for her daughter and others in need.
“We just have to reach out to more of the Asian community and networking groups,” she said. “Our goal is to educate people about being a donor.”