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View Full Version : need for bone-marrow registries for non-Caucasians


crossf
02-28-2007, 09:18 AM
I would like to introduce myself. I am a professor of genetics at the Rockefeller University, of Caucasian background, married to Elizabeth Kim, who arrived from Korea at the age of 12. We have a son, Sam, who is currently a senior at Harvard. Over the winter break he was diagnosed with acute myeloid leukemia. He has been undergoing extensive chemotherapy. It is possible that a final cure for this deadly disease may require a bone marrow transplant. Unfortunately, even though there are currently more than 7 million donors registered internationally, none are an exact tissue typing (HLA) match for Sam, since he has a relatively rare Caucasian haplotype from me and a more typical Asian one from his mom. Therefore, the most likely source for a perfect match for Sam are people with both Caucasian and Asian ancestry (1/2, 1/4 or 3/4 Asian could all be fine).

Since your organization is interested in issues arising from mixed race and culture, I am writing to ask if there are any of your members who might be interested in registering as bone marrow donors. Registering as a potential donor is completely painless, involving filling out a form and taking a cheek swab. Most potential donors are never asked to donate, but the donation process itself involves only some moderate inconvenience and possible discomfort, and of course has the potential to save a life. The removed stem cells are rapidly regenerated by the donor’s body so there are no medical consequences at all for the donor.

Kits for registering as a potential donor are available from DKMS Americas (http://www.dkmsamericas.org/donors/become.html) including a pre-paid FedEx package for returning the material. DKMS Americas will provide HLA testing and entry into the registry for absolutely anybody independent of racial or ethnic background, for no fee.

DKMS Americas will also help you organize a local drive if you are at all interested in doing this. Mostly they need a local contact person.

Another organization that will provide kits through the mail, and that also helps organize drives, is AADP: http://www.aadp.org/become_a_donor.html. AADP specializes in people of Asian or part-Asian extraction.

Sam is registered on Facebook, and you can also get some information about him on a website generated by his uncle: http://www.helpsamiam.com.

I would like to emphasize that our interest here extends way beyond just finding a donor for our son. In the U.S., only about a fifth of patients needing bone marrow transplants can find donors, and this problem is particularly acute for those of mixed racial backgrounds, due to differing distributions of HLA types among human sub-populations. We encourage people of all ethnic backgrounds to register.

The thread below labeled 'Help Harrison' makes many of the same points I make above, and also has some more useful information and links.

kimpossible
03-17-2007, 03:24 PM
Who knows if the guy is on the up and up but regardless, I'm considering registering as a potential donor. I have a daily mini-panic attack about my son being in that position. For some reason I feel more motivated to register now that I'm a mom than before. The biggest obstacle will be my husband.

And having the spinal extraction. "Some pain" b.s. I've had an epidural. Try my screams echoed down the hall of the maternity ward.

Green_Jade
03-17-2007, 08:10 PM
And having the spinal extraction. "Some pain" b.s. I've had an epidural. Try my screams echoed down the hall of the maternity ward.

Registering as a donor only took a blood sample. I can't remember if it was more than one tubes they took, but it wasn't much. Anyway, that's what they did when I registered as a donor... it may have changed, I registered 7 or 8 years ago.

...and I think if you do end up becoming a donor, you can get knocked out for bone marrow aspiration or at least a local with MAC...

kimpossible
03-19-2007, 01:18 PM
Not the registration but the spinal extraction. Doesn't really matter. I got through 36 hours of labor. It's probably a cakewalk in comparison.

Ordered my kit today. Looks like it'll be the same screen I did for prenatal and then again as a milk donor.

deez nuts
03-19-2007, 05:03 PM
you tell him where it's at, my beloved kim!

Green_Jade
03-19-2007, 08:04 PM
Not the registration but the spinal extraction. Doesn't really matter. I got through 36 hours of labor. It's probably a cakewalk in comparison.


I know what you meant. If people just skim through the first post and miss how easy it is to register, reading your post might dissuade them from registering. ...and it's bone marrow extraction. The harvest isn't done near the spine.

applehead
03-19-2007, 10:26 PM
hey, those are great links. i'll forward those to my friends.
i've been reading quite a few news stories in the korean paper
the past couple of years regarding half korean children
being diagnosed with leukemias.
their parents asking people to become donors.

kimpossible
03-21-2007, 04:45 PM
I know what you meant. If people just skim through the first post and miss how easy it is to register, reading your post might dissuade them from registering. ...and it's bone marrow extraction. The harvest isn't done near the spine.

No? I could have sworn they took it via your backside via a pamplet I got at some drive years ago. So drilling my bones. Much more inviting.

Look, we're going to keep going rounds about this even though we're after the same thing. You don't like the way I see something extracted from my body as a most likely painful process, fine. I'm pretty sure the jig was up with the term marrow extraction for most folks.

Don't worry so much. It'll be a win-win. I've got my package on the way to register and going to try to guilt many others into do it. Maybe I'll call them wusses if they don't.

On a more serious note I'd personally like to push [birth] cord donation amongst Asian Americans in conjunction to registering as a donor. Had I known about donating a cord sooner I would have.

kimpossible
03-21-2007, 04:47 PM
you tell him where it's at, my beloved kim!

I don't think he cares as long as people register. Speaking of which, are you registered Mr. Dr. Lifewinner? You got plenty of extra fluids. You don't need all that for yourself. You're a big guy.

You know if I give some blood too that will make the third body substance I've given away.

deez nuts
03-22-2007, 03:21 PM
I don't think he cares as long as people register. Speaking of which, are you registered Mr. Dr. Lifewinner? You got plenty of extra fluids. You don't need all that for yourself. You're a big guy.

You know if I give some blood too that will make the third body substance I've given away.

i try and donate my fluids whenever i can