Wednesday, November 30, 2005

become a hero: save a life

November is designated as National Marrow Awareness Month by The National Marrow Donor Program (NMDP), a nonprofit organization that operates the National Bone Marrow Donor Registry under contract from the federal government through the Health Resources and Services Administration. (Too bad I learned about National Marrow Awareness Month only two days ago.) Since its founding in 1986 up until 2001, the NMDP had facilitated more than 13,000 unrelated marrow and blood stem cell transplants for patients with life-threatening illnesses, such as lymphoma (like Hodgkin’s Disease which I have), leukemia, Sickle Cell Anemia, and other genetic and metabolic disorders.

Unfortunately, the work of the NMDP continues. According to the Dana-Farber Cancer Institute, every 18 seconds someone in the US is diagnosed with a life-threatening illness that requires a bone marrow or stem cell transplant. Finding a donor match is not easy and the process can become a prolonged and indescribable challenge to the patient and his or her family. ‘"I don't think people realize how important it is (to be a potential donor) until they're in that situation," said Jillian Wren-Phillips, whose 23-month-old son William "Little Will" Phillips III is battling acute myelogenous leukemia." It gets pushed to the back burner. They don't understand how big a need there is."’ (5/9/05 The Detroit News) Although the search for a perfect donor can be difficult for any patient in need of a transplant, it is scary particularly for those of minority communities, such as African Americans, Latino Americans, Asian Americans, Indian Americans, and Native Americans:

Each year, an estimated 30,000 Americans are diagnosed with a wide range of life-threatening diseases for which a marrow or blood stem cell transplant can be the best hope for a cure. Nearly 70 percent of these patients will not find a suitable donor in their family and will turn to the NMDP for a volunteer to donate healthy stem cells for their lifesaving transplants. Although more African Americans, Asians/Pacific Islanders, Hispanics and American Indians/Alaska Natives are finding donors for their transplants, they are still less likely than Caucasians to identify a matched donor. More donors of diverse race and ethnicity are needed, so that all patients will have an equal chance at finding a matched donor (The Marrow Foundation).


No one knows if and when they or someone they know or love will become the needed recipient of a bone marrow or stem cell transplant. Fortunately, improvements in transplants offer the potential for thousands of individuals with malignant disorders to fight and reclaim their own lives from the life-threatening illnesses they face. Many times, however, these patients’ hopes remain just that because there simply aren’t enough registered donors out there. Therefore, the search for a donor match is more difficult than it should be. ‘"Every individual should be in the registry," said Vyas, 40. "It doesn't matter if you're Asian Indian, African-American, Caucasian. If you match, you can save someone's life."’ (5/9/05 The Detroit News)

The donation of cord blood is another awesome resource, which has had tremendous success in treating patients of lymphoma, leukemia, and other illnesses. Thousands of patients who might benefit from transplants die every year waiting for a bone marrow match unaware of the cord blood option, and possibly unable to access it. Experts say it offers a more effective form of therapy than stem cells derived from bone marrow:

Cord blood also offers an extraordinary amount of hope for African Americans, who have the lowest success rate of finding non related bone marrow donors. The ethnic diversity of the bone marrow registry is quite low, although African American’s make up 12% of the population, they only account for 6% of the bone marrow registry. Many African Americans also have both European and African ancestry with puts them at a disadvantage because a person with both tissue types has much more difficulty finding a match. Because of the diversity of tissue types, African Americans would require three times the number of donors as a Caucasian to have the same chance of finding a match. Cord blood is a particularly good choice for this community because it doesn’t require a perfect match. (Senator Charles Schumer, US Senate Press Release)


In learning about my diagnosis with Hodgkin’s Disease, many of you have asked about ways that they can help. Some of you have done so much for my family and me and for that we’re eternally grateful. If I can, however, ask of one thing from you that would be for all of you to think about the pressing issue that I have raised here and the dire need of thousands of other Americans in search of a donor match, who have illnesses similar to my own. Hopefully you’ll consider donating your own bone marrow, stem cells, or the cord blood from your baby’s umbilical cord and in the process tell others about this great need. If you choose to not donate perhaps you will at least begin to give blood regularly at your local blood bank. Whole blood is another life saving resource, which is also in great need.

In sum, I think Amy Burger of the Marrow Program said it best: ‘"What you're asking someone to do is almost miraculous; it has no inherent benefit to the donor. But they can give someone the gift of life."’

Thanks for taking the time to read this.

To find out how you can join the registry of the National Marrow Donor Program (NMDP) to donate bone marrow or stem cells, please click:
www.marrow.org

To find out how you can donate cord blood, please click: http://www.marrow.org/HELP/donate_cord_blood.html
www.nationalcordbloodprogram.org

To find out how you can donate whole blood in NYC, please click: www.nybloodcenter.org

To read further about the great need for bone marrow, stem cell and cord blood donors, please click on the following articles:

“National Marrow Awareness Month: Celebrating Everyday Heroes,” The Marrow Foundation

"November is National Marrow Awareness Month," Dana-Farber Cancer Institute

"The Life-saving Gift of Bone Marrow," Duke Med News

"Tens of Thousands Die Each Year Waiting for Bone Marrow Donor; Schumer Announces New Federal Umbilical Cord Blood Program, Will Save Lives of NY’ers," United States Senate Press Release

"Shortage of Minority Bone Marrow Donors Proves Obstacle," National Institute of Health

"Lack of Bone Marrow Donors Hurts Minorities," The Detroit News


"A Bone Marrow Crisis," The Brooklyn Rail

“African-Americans Less Likely to Find Bone Marrow Donors,” NMDP

"Black Patients Need Donors," NMDP

"Matter of life rouses Latinos to give hope," The Arizona Republic

"Making a Perfect Match," Science & Technology News


"National Marrow Donor Program Needs More Native American Donors," MinorityNurse.com

1 Comments:

Comment Anonymous Anonymous said...

Hi Duane - Really great post! I want to help you get the message out there so I am copying your post and pasting it on my CaringBridge site with a link to your site, of course...I hope you dont mind but I really feel its an important message to get out there.... here is my site in case you lost it... http://www3.caringbridge.org/ny/tianna/

All the best to you!

Thanks
Tianna

8:37 AM  

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