By RYOKO NAKAMURA
RAFU JAPANESE STAFF WRITER
This is the first in a four-part series focusing on several individuals who have been involved with life-saving surgical bone-marrow transplantation.
“Severe pain” may be the first thought that comes to mind when you hear the words, bone marrow transplants. How many people know the facts? There are two different procedures—a surgical bone-marrow transplantation and a non-surgical peripheral blood stem cell transplantation, or PBSCT. Seventy-five percent of the procedures performed in the U.S. are PBSCT, and finding a match is linked with your racial background.
These are stories of some patients who have been waiting for a donor match to simply survive, donors who are willing to help save lives, recipients who appreciate every minute of their “new” lives, and specialists who support them.
West L.A. native, Krissy Kobata, 28, was like any other healthy young woman, enjoying her life until she noticed severe bruises on her body with no apparent cause.
Three years ago she was diagnosed with myelodysplastic syndrome, a blood disorder, also known as preleukemia. While there are medications that can help stabilize patients with MDS, a bone marrow transplant is the only cure.
“I had never heard of MDS or what a bone marrow transplant entailed. It was very scary and overwhelming. You never expect to be handed out a life-changing diagnosis at 25,” said Kobata.
Complicated by Increase in Interracial Marriages
Finding a donor with the same human leukocyte antigen (HLA) typing identified by the microcytotoxicity test, a tissue-typing test developed by Dr. Paul Terasaki, a noted scientist in the medical field and a UCLA professor emeritus. This is the first step for a patient seeking a marrow transplant.
Dr. Yutaka Niihara, a clinical professor of medicine at UCLA who specializes in internal medicine, hematology, and oncology, says HLA typing is determined by a combination of HLA genes inherited from each parent. This results in four possible combinations per pair of parents. Each child of the same parents randomly receives one of the four combinations. Therefore, there is a 25 percent chance of finding a match among siblings. Aside from siblings, matched donors may be found through the National Marrow Donor Program, that manages the Be the Match Registry.
Because tissue types are inherited, patients are most likely to match the tissue type of someone who shares their racial or ethnic heritage.
“The odds of finding a match among unrelated Japanese registered volunteers for Japanese patients are 90 percent, which is very high compared to other ethnicities,” Dr. Niihara explained, “because Japanese people have relatively similar genetic makeup, resulting in similar HLA typing patterns.”
On the other hand, an ethnic group with a relatively diverse genetic makeup—African Americans—has a less than 5 percent chance of finding a match within a donor group.
Likewise, the odds are very slim for those who are hapa or mixed race. By having multiple ethnic backgrounds, HLA typing patterns become more complicated and difficult to find a donor who shares the exact same ethnic background.
Born hapa, half Japanese and half Caucasian, Kobata now faces this very situation. Her brother isn’t a match so she has been looking to the Be the Match Registry as well as registries in other Asian countries for the last two years.
About 8 million have registered on Be the Match Registry. Seventy-four percent of those are Caucasians (about 6 million), 10 percent are Hispanics/Latinos (0.8 million), 7 percent are Asians as well as African Americans, and only 3 percent have multiple ethnic backgrounds like Kobata.
Currently, she is not on any medication. “Personal strength and positive attitude will get you through the toughest of times,” she said. “Having a support system—from family and friends—is essential and without having amazing friends, staying positive, and looking towards the future, the road gets too dark and hard.”
Kobata has been working on raising awareness about the diseases and transplant procedures by helping organize local bone marrow drives.
“We are all connected in this world and what better illustration of that is having someone match another’s marrow and saving their life,” she said, encouraging people to consider registering. “It’s a much easier process nowadays. It’s my only hope for a cure…”
Cultural Background is Critical
“As interracial marriages became more common, cases like Krissy’s are becoming common” said Ayumi Nagata, a coordinator for Asians for Miracle Marrow Matches, widely known as A3M.
Established in 1999 at the Little Tokyo Service Center as a Be the Match affiliate, A3M has been educating the Asian Pacific Islander communities about bone marrow transplants and recruiting donors for the Be the Match Registry.
According to Be the Match, of the 8 million people registered, only 550,000 are Asians, which represents a scant 7 percent of the 6.6 million Asians between age 18 and 60 who are eligible to register.
One of the reasons such a low percentage of Asians has registered may be a cultural factor, Nagata points out. Some still believe that donating a part of their body will make them sick, plus the fact that Asians are highly influenced by family opinions.
“We’ve seen many situations where one wants to become a donor, but once family opposes, they have to give up,” explained Nagata, who was born in Japan and lived there until age 10 coming to the U.S.
“The more people register, the better chances a match can be found. Having knowledge about a bone marrow transplant is the first step,” she said, adding that she makes every effort to let the community know about the facts of bone marrow transplants.
To read more of Krissy’s story, visit www.teamkrissy.com. For more information about bone marrow transplants, call A3M at (213) 625-2802 ext. 103 or visit www.A3Mhope.org. You can also find more information at the National Marrow Donor Program at www.bethematch.org.
In tomorrow’s Rafu Shimpo, the manager of a popular sushi restaurant shares his experience as a donor for a 14-year-old Japanese girl.