by KIM TUYEN NGUYEN

Lan Nguyen has suffered as few have. Three of her four children were diagnosed with Hyper IgM syndrome, a rare and fatal disease. While battling this immunodeficiency disorder Tuan, the oldest of the three brothers, passed away on October 12, 2006 at the age of 17. Tuan’s death was more than just unfortunate, it was preventable.

A relatively simple procedure called a bone marrow transplant could have saved Tuan’s life. However, due to the limited number of Vietnamese Americans registered with the National Bone Marrow Program Registry, Tuan’s life was cut short. And there are still many more Vietnamese patients who are urgently waiting for a marrow match; it will take more than wishful thinking to save their lives.

In the case of Tuan and his baby brothers Hyper IgM syndrome weaken their immune systems and leave their patients prey to infection. Marrow is the site for major blood cells production. When a donor donates his/her marrow, the healthy marrows replace the patient’s damaged marrows and induce production of new and healthy one. A successful bone marrow transplant allows patient to recover and have the opportunity to lead a full and healthy life.

Dr. Lam Do knows this well. At the tender age of 19 months, his son Luke Do was diagnosed with leukemia. Miraculously out of 5 million people on the database only one individual was a match for Luke. On March 18, 2002, Sergeant Randall Yamanaka gave Luke a new life by donating his marrow. Now more than six years later, Luke is attending school and continually thriving in his everyday life. This miracle happened because of Sergeant Randall Yamanaka’s heroic gift.

Treasuring this, Dr. Do said “This miracle is such a precious gift. We are so grateful to have Luke with us, and this is all owing to Sergeant Randall Yamanaka selfless and gallant contribution.”

Necessary Racial Profiling
The characteristics of marrow are genetically inherited, so a patient’s most likely match is within the same racial or ethnic group. Coming from a mix racial background of Japanese, Caucasian and Vietnamese Luke is very fortunate to have found a matching donor.

Anthony and Kevin Nguyen are Vietnamese and will most likely need a donor with the same ethnic background. As the clock ticks, they wait in desperation for a match from the registry. But without the Vietnamese community’s awareness and involvement in the registry their wait may be futile.

The chance of a Vietnamese American finding a match for a Bone Marrow Transplant (BMT) is literally less than one percent. As of October 2006, the number of Vietnamese donors nationwide in the National Marrow Donor Program (NMDP) Registry is 6,616. That makes up 0.1 percent of the entire registry. Since the inception of the NMDP in 1986, only six Vietnamese out of the 6,616 registered has gone on to donate. Registering in the registry does not mean you will go on to donate. Even though we are one of the largest Asian populations in the United States, Vietnamese have the lowest number of registered donors. At 6,616 the Vietnamese populations number pale to that of the Chinese population at 64,509, the Korean population at 53,801, and especially that of the Caucasian population at 3,167,035. The implications are dire. If a person of Vietnamese ethnic background is diagnosed with a fatal blood disease he or she will have a lesser chance to live than that of other races due to the limited number of Vietnamese donors in the registry.

“Registering as a potential marrow/stem cell donor will directly effect members in your community, not the Caucasian, Korean or the African American communities, but the Vietnamese community. You have the power, in your marrow/stem cells, to make a major difference not only in your community but within the family unit,” emphasizes Carol Gillespie the executive director of the Asian American Donor Program.

Blood-Free Registration Drive Waives Fees
To increase the number of Vietnamese donors in the registry, Vietnamese donors need to sign up. The registration process is easy. Due to the urgent need for minorities to be in the registry, the normal registration fee of $52 is waived for all minorities. Registration eligibility requires a potential donor to be between the ages of 18 and 60, and he/she must meet the health guidelines set forth by the NMDP. The registration process includes completing a consent form, and a 1-minute cheek swab using a swab like of a Q-tip.

Donors are not obligated to donate after signing up. Once a donor is registered their tissue types are stored in the registry until they are 61-years old. The registry understands that life circumstances change and donors are not always ready to donate once they are identified as a potential match.

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