Missing a bone marrow match and left in limbo Watch Video Read Comments
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By Joe Roetz
Friday, November 06, 2009 at 9:06 p.m.

Read more: Local, Donor, Bone, Marrow

Take a look at the smile on 17-year-old Taylor Matt and you wouldn't know she was battling leukemia. "A lacrosse player at heart, Taylor was diagnosed with Acute Myelogenous Leukemia 2 months ago. It's the second time in 5 years she's been in the hospital with cancer, and doctors already have her on chemo-therapy. Taylor says, "That isn't a cure like a transplant is, but it's the only thing they can do, hoping it won't come back."

Taylor needs a bone marrow transplant, but after searching through millions of potential donors, her family can't find a match. Taylor's parents believe it's because her father is Native American. Taylor's Mom, Debra, says a neighboring patient found a match almost instantly. "Hundreds for one child. Multiple opportunities. But for someone like us, we have zero opportunities. There's not enough ethnical mixes," says Debra.

Taylor is not alone in looking for a bone marrow match. According to the National Bone Marrow Registry, there are 7-million donors worldwide. Of those on the list, only 8% are African-American, and less than 1% are American Indian. Paula Miller works with the Bill Pomeroy foundation in North Syracuse, helping to add people to the bone marrow registry. Paula says, "Antigens are markers that are found on most cells and you're trying to match antigens to someone else."

With more than 10,000 diagnosed with leukemia each year, Paula says more minorities need step forward. "In many cases it is a life and death situation, and they will pass away," says Paula.

Even Taylor admits she wouldn't have known the need to register if she wasn't diagnosed. "Not that people don't care, it's that they're not informed," says Taylor. She plans to fix that as she waits for a match.

On Thursday, November 12th, the Sigma Gamma Rho sorority at Syracuse University will hold a Bone Marrow Donor Drive in the Student Center from 11:00 AM - 2:00 PM.  For more information, call 585-472-4715.

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2 Comments on this Story
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How to register as a marrow donor and what happens if you are a match

Posted by Jennifer St. Peter, Providence, RI - Monday, November 09, 2009 at 10:07 p.m.

It's very easy to register as a marrow donor. All you do is complete registration paperwork and swab the inside of your mouth with four cotton swabs. These swabs collect cheek cells which help determine your HLA (Human Leukocyte Antigen) type. Your HLA type is listed in a worldwide database and checked constantly against the HLA types of patients searching for a donor.

If you are found to be a match there are two ways you can donate the life-saving cells needed. The most common way to donate is called a Peripheral Blood Stem Cell (PBSC) donation. The donor receives a series of injections that stimulates the bone marrow to create extra blood forming cell in their blood stream. The donation is generally one day, about 4-5 hours on a machine that takes the blood from one arm, strips out the extra cells, then returns the blood to the other arm. 80% of donations are done in this manner. The most common side effect is feeling like you are coming down with a cold (fatigue, muscle aches. This is from the build up of cells in your system and goes away pretty quickly after your donation.

20% of donations are a done through a minor surgical procedure, done under anesthesia, where doctors insert a specially designed needle into the back of the hip bone to remove marrow. Most donors report their lower back is pretty stiff and sore for a few days following the procedure, but are generally back to their normal routine in 2-3 days.

For more information visit www.BeTheMatch.org or feel free to email me if you have questions at jstpeter@ribc.org. I am a recruiter for the Be The Match Registry, operated by the National Marrow Donor Program, working out of the Rhode Island Blood Center.

helping

Posted by B Thompson, Watertown - Saturday, November 07, 2009 at 4:02 p.m.

I think more people would be willing to be a donor but I don't think we all know what is involved. So, what are the steps invovled? How is it done,, etc?? I hope and pray she is able to get a donor to match!

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