San Francisco, CA – Kyle Crawford, 4, was diagnosed with aplastic anemia, on December 7, 2011. He is in urgent need of a marrow transplant, this is his only hope for long term survival. Kyle is Chinese and Caucasian and lives in San Mateo.
It’s difficult to watch a loved one with a long-term illness linger, when with more resources their pain might be eliminated and they might have a new lease on life. Those who are not Caucasians are more likely to die of leukemia or of other blood cancers. This is because there is a shortage of multi-ethnic donors on the national Be the Match® registry.
What’s the solution? Encouraging more people of multi-ethnic heritage to join the Be The Match® registry and potentially save a life. Each of us can “Be The One to Save a Life!” For Kyle, as no family members are a match, it is likely that someone of Asian or bi-racial heritage will be a marrow/stem cell match for him. A marrow transplant can extend and/or save Kyle’s life. Aplastic anemia is a disease of the bone marrow that occurs when your body stops producing enough new blood cells and platelets. Aplastic anemia leaves you feeling fatigued and at higher risk of infections and uncontrolled bleeding.
“We need everyone of Asian, multi-ethnic and ethnic minority ancestry to step forward and join the marrow registry,” says Carol Gillespie, executive director of the Asian American Donor Program (http://www.aadp.org). “There is a shortage of non-Caucasians on the Be The Match® national registry. This means that patients have to wait longer than is ideal to find a match.” AADP staff continues to provide education about the need and how relatively easy it is to register and to donate if needed. If you are found to be a match, the donation procedure will either be marrow collection or Peripheral Blood Stem Cell collection (PBSC). In Kyle’s case, marrow donation will probably be requested.
How You Can Help
• Go to one of the upcoming drives and do a cheek swab to join the “Be the Match” national registry. To find a registration drive, visit http://www.aadp.org, go to the “Register” tab and scroll down to “Where to Register.” If there are no drives in your area, request a home test kit. You can do this by going to the “Register” tab and scrolling to “Request a Home Kit”. A kit will be mailed to you the next day.
• Contact friends and family and encourage them to go to a registration drive near them or request a home kit.
• Set up a drive in your area by calling AADP at 1-800-593-6667
• Volunteer to help at registration drives or in the AADP office.
More about Kyle Crawford
Kyle’s favorite things in the whole world are fish and sharks and whales. One day he would like to swim next to a great white shark. His favorite game is Angry Birds, and he is really good at it. He loves super heroes, too. And, he loves his baby sister, who is only eleven months old. His parents always tell him that his birthday is a really lucky day because he was born on 7/7/07.
Shortage of Multi-Ethnic Donors—What’s the solution?
The Be The Match® registry recruits hundreds of thousands of donors each year through an extensive network of more than 100 local and regional recruitment organizations. All of these organizations recruit for the national Be The Match® registry and each person only needs to join once.
A marrow/stem cell transplant may be the only chance for patients with leukemia or other blood cancers to survive. Those who are not Caucasians are more likely to die of these illnesses. This is because there is a shortage of multi-ethnic donors on the Be The Match Registry, operated by the National Marrow Donor Program® (NMDP). Only 30% of the time can a searching patient find a match from one of his or her siblings.
Finding a Needle in a Hay Stack
“Finding a marrow/stem cell match can be like finding a needle in a haystack,” says Carol Gillespie, AADP executive director. “Patients need a marrow/stem cell transplant as soon as possible. Saving lives is what we’re about. People of all ethnicities are encouraged to join the Be The Match registry. You could potentially match anyone in the world, this is truly a global effort.”
When a donor that is a close enough match cannot be found, a patient’s health can decline. That waiting period can make things harder, because a weakened immune system is more likely to reject a transplant once a donor is found.
Marrow/stem cell matches are very different than blood type matches. Just as we inherit our eyes, hair and skin color, we inherit our marrow and stem cell tissue type.
“Those whose marrow/stem cells are not a match for a patient in need now may be a match for someone else down the road,” Gillespie says. “Registering to be a marrow/stem cell donor is simple.”
Donors must be in good general health and between the ages of 18 and 60. A tissue sample from the inside of your cheek is collected on Q-Tip like swabs for HLA testing. Each participant is asked to give their consent to have their tissue type listed on the Be The Match Registry, which searches for patients in need.
AADP, a 22-year-old community non-profit organization, serves multi-ethnic communities. They conduct community education, outreach and donor registration drives in the Asian, Pacific Islander, Multi-racial communities, and the entire ethnic minority community. AADP staff conducts public education and hosts drives for ethnic communities at fairs, festivals, faith-based organizations, work places, colleges and more. AADP is in full gear scheduling drives to increase the numbers of ethnic minorities and multi-racial individuals on the national Be the Match® registry.
AADP conducts about 360 marrow/stem cell drives yearly, where individuals of all ethnicities are registered. AADP works to increase the availability of potential stem cell donors for patients with life threatening diseases curable with a marrow/stem cell transplant. AADP was the first recruitment group in the country to conduct community focused marrow/stem cell drives. It is affiliated with Be The Match®, NMDP. For more information about AADP and upcoming marrow drives, call 1-800-593-6667 or visit www.aadp.org/