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Leukemia Patient Takes an Activist’s Approach : Medicine: Katalina Um, 22, is determined to find an Asian to contribute life-saving bone marrow.

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SPECIAL TO THE TIMES

When cancer forced its way into Katalina Um’s life the first time, she was in the midst of a personal mission to help feed Ventura’s homeless.

The Ventura woman continued handing out hamburgers, bald underneath her wig and weakened, sometimes just days after experiencing the grueling effects of chemotherapy.

Now, after 13 months in remission, her particularly aggressive form of leukemia is back. And doctors have told the 22-year-old she has six months to live--unless she finds a perfect match for her bone marrow.

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But medical experts say that is not likely, because Asian enrollment in a national bone marrow donor program is so low. So Um, an unquenchable optimist, has turned activist again.

Together with a group calling itself Friends for Katalina, Um has printed hundreds of flyers telling her story. The group is distributing the bulletins to community groups in Koreatown, Chinatown and other Asian enclaves in Los Angeles and Ventura counties, and to minority newspapers and Asian churches. They also plan to plaster grocery stores with the flyers.

Their goal is to reach the nearly 1 million Asian residents who live in Los Angeles and Ventura counties and increase the number of minorities, particularly Asians, registered as potential bone marrow donors.

Um has also written to Oprah Winfrey, Phil Donahue and about eight other major talk show hosts and news programs in an attempt to get national exposure for the group’s efforts. She will tell her story anywhere, Um said, in order to deliver the message that more minority donors are needed to help save lives.

If she is lucky, she may save her own.

“I don’t even hope,” said Um in an interview Thursday from her Ventura residence. “I know I will save my life.”

Um returned home Wednesday from a three-week hospital stay in the cancer ward at UCLA Medical Center that included another round of chemotherapy. This latest attempt to halt the leukemia’s progression has left her bald for a second time.

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This time, though, she doesn’t automatically pull on her wig when a visitor arrives.

“I’ve become so used to having no hair,” she explained cheerfully.

Um was a part-time actress and Ventura College student when she was diagnosed in July, 1992, with acute lymphoblastic leukemia. The disease occurs more often in children and is much harder to cure in adults, her doctor has said.

Just a month earlier, she had started a one-woman mission to feed the homeless who live in the Ventura River bottom and others elsewhere. The sight of the tall, slight woman walking with a box laden with McDonald’s hamburgers became so familiar among the homeless that they called to her by name.

Um has had to halt her twice-monthly treks into homeless hangouts because of her relapse, she said.

Her doctors say her only hope now is to receive a bone marrow transplant as soon as possible. Her best chance for a marrow match would be with a full brother or sister, but Um has no immediate relatives in the United States.

Born in Seoul, Korea, Um’s father is dead and her mother cannot be found. Her only hope is to find an unrelated donor through the National Marrow Donor Program. But her chances are slim because so few Asians are enrolled in the registry, officials said.

Ethnicity is a primary factor in matching donors with recipients, registry officials said.

Just 4% of the 951,000 potential donors listed in the national registry are of Asian ancestry, said Sharon Sugiyama, assistant project director at Los Angeles-based Asians for Miracle Marrow Matches. Of 2,000 Asian patients who have sought matches through the registry in the past six years, only 10 have found suitable donors, Sugiyama said.

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By contrast, 69% of potential donors are Caucasian.

Sugiyama and other volunteers formed Asians for Miracle Marrow Matches two years ago to help increase minority enrollment. The group educates community groups about the need for more minorities and explains the screening and donation process out of an office in downtown Los Angeles, she said.

Um said her eight-person group is taking similar tactics, augmenting the work of Asians for Miracle Marrow Matches.

One issue she hopes to focus on is the relative ease of being a donor, Um said. People often have misperceptions of what the donation process involves, she said.

“My friends thought you had to have a piece of bone taken out, and that you had to stay in the hospital for six weeks,” Um said. “And these were educated people.”

Potential donors need only give a blood sample at a local recruitment center, Um said. Then, if someone proves to be a match, the donor is hospitalized overnight and about a quart of gelatinous bone marrow is drawn by needle from a hip, she said.

The hip area will feel bruised for several days and then heal, she said.

Blood screening for potential Caucasian donors cost between $45 and $75; minorities can enroll for free with funding from the National Marrow Donor Program, Sugiyama said.

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“They have allotted that funding because the pool is so unbalanced right now,” Sugiyama said.

Um said she would like to see federal funds earmarked to pay screening costs of all potential donors regardless of their ethnicity. Her group is planning a November fund-raiser to set up a special fund to help pay the screening costs for anyone who wants to be a potential donor.

“People who want to do a kind, generous act should be rewarded, not charged financially.”

Anita Young, who met Um after reading a newspaper story about her, is helping the young woman organize the enrollment campaign. Young, 27, an Alhambra resident, said she was compelled to help not only because she is half-Korean, but because she has become good friends with Um since meeting her earlier this year.

“Life has more meaning for me since meeting Kat,” Young said. “Katalina has such a huge obstacle and she doesn’t let it get her down. I have seen her with tears in her eyes, but she always has a smile.”

FYI

Several organizations provide information on how to become a bone marrow donor. They include the National Marrow Donor Program at 800-MARROW2; the American Red Cross Marrow Donor Program of Southern California at 800-246-7877; and Asians for Miracle Marrow Matches, at 213-626-3406 or 213-626-3827.

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