(New York- USA Today) It sometimes stuns Mandy Manocchio-Putney how quickly she went from busy New York City wife, mom and fashion executive to advocate for leukemia patients.
But here she is, a little more than a month after her own leukemia diagnosis, hair down to a black peach fuzz from chemotherapy, getting the word out to reporters and organizations. The message of this Korean American: It is a lot more difficult for Asian Americans, African Americans and mixed-race people to find donor matches for potentially life-saving bone marrow transplants.
A study by the University of Pittsburgh School of Medicine found religious objections and distrust about use of stem cells were among the reasons people of color are not as well represented as they might be among donors, and the study author says people of color are more likely to have rare genetic types. The organization Delete Blood Cancer which aims to encourage more people to donate marrow reports there also are misconceptions among people overall that the donation process is painful.
Manocchio-Putney, 40, says the most important part of her message is "the need to create awareness among ethnic groups about how easy it is to donate."
Laptop, iPhone and papers are all over her bed at New York University Langone Medical Center. Her walls are covered with drawings, upbeat signs and photos of her children, family and friends.
Some people, when they think of becoming a bone marrow donor, "they think 'invasive,'" Manocchio-Putney says. The process involves extracting marrow with a needle, usually under general anesthesia. "They're uneasy because they don't know" the process is not painful and testing involves just a cheek swab or a blood test.
Manocchio-Putney's trip down this road started over the July 4 holiday, when she was visiting her family in the Boston area. She became ill with fever and chills. When she went to the hospital, blood work turned up abnormalities.
More tests when she returned to New York revealed what was wrong: acute myeloblastic leukemia.
Alec Goldenberg, Manocchio-Putney's hematologist-oncologist, says chemotherapy can send a leukemia patient into remission -- meaning no evidence of the disease, although the patient is not necessarily cured -- and that is what it did for Manocchio-Putney. But keeping a patient in remission is a challenge. Manocchio-Putney needed two rounds of chemotherapy, and her molecular markers -- the makeup of proteins in her DNA -- signify a poor prognosis, says Goldenberg, a clinical associate professor at NYU Langone.
Manocchio-Putney needs a bone marrow transplant, he says. Because she was adopted, she is unable to find the people who might provide the best matches, her blood relatives. Being of the same ethnicity helps, though.
A patient's likelihood of finding an adult marrow donor is 93% for whites, 66% for blacks, 82% for Native Americans, 73% for Asians and 72% for Latinos, according to Be the Match National Marrow Donor Program.
Manocchio-Putney says that when she got the news about what was wrong in mid-July, she was ordered directly to the hospital.
"I had my moment -- about 10 minutes of hysteria -- but then the doctor said, 'Don't blow your nose, because it could be catastrophic,' " Manocchio-Putney says with a laugh.
And that was it for letting the news weigh her down.
"I am the mother of two little boys who need me," she says. II have a 5-year-old and a 6-year-old who need me. I mean, come on."
Manocchio and her family and friends are going all out to find her a match and also to get the word out about how people of all ethnic groups need to consider being matches. There are drives planned for New York and the Boston area to find potential matches. They have been talking to news media, including Korean TV.
WAYS TO HELP: Donor drives and fundraising efforts have been set up
Blogger Meg Gerritson of Hull, Mass., read about Manocchio-Putney in The Boston Globe and wrote about her on MomMeetMom.com, a blog she co founded. She posted the piece on Facebook and it went viral, Gerritson says.
"When I first heard that her odds were a lot lower and she didn't have the benefit of that direct bloodline because she's adopted, I just thought, 'Wow, this is tough for her.' You just want to help,' " says Gerritson, 30.
"Then again, it's these types of cases that really bring stuff like this into the spotlight," she says.
Manocchio-Putney has the Italian name of her adoptive family in Massachusetts, but she was born in Korea, found on the streets of a small town outside Seoul as a toddler in 1973. A note attached with a safety pin gave her date of birth. There was no clue to the identity of her birth parents, she says.
So for now, the plan for Manocchio-Putney and her husband, Bill Putney, is full speed ahead on finding a match. She and her family have recently moved to the Boston area to be with her family for the added support.
"We said, 'It's a temporary thing. It's a bump in the road.' " Manocchio-Putney says. "The genuine kindnesses of people have opened my opened my heart in ways I cannot put into words."