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Bone Marrow Donation
August 6, 2008 3:01 PM   Subscribe

Using YouTube to find a bone marrow donor A 26 year old woman is using YouTube to help find a bone marrow donor. If nothing else, take some time to learn a little about matching.
posted by socalsamba (17 comments total)

 
In a related story, Erica Murray of "If I Had a Marrow Donor" fame is cautiously optimistic.
posted by Loser at 3:23 PM on August 6, 2008


Friends and family of Emru Townsend have also been using Facebook to increase awareness of marrow donation.
posted by ~ at 3:33 PM on August 6, 2008


Ah, I hadn't been following Erica's story for a while. Good to hear that she found and had a transplant. She's the reason why I'm in the donor database.

You know, I realize they need to inform people of the risks and whatnot, but christ, the whole process of just registering was terrifying. I wonder if there's a way to get out from under the cloud of fear (that seems self generated) and get more people to register.
posted by danny the boy at 3:43 PM on August 6, 2008


Man, I've been on the donor list for almost 20 years now, still hoping to get a call-up someday.
posted by Camofrog at 3:44 PM on August 6, 2008


Why do you have to be an ethnic minority to order a home kit? Not hat I find, since I am but I found that odd. Anyway, I'm gonna order one.
posted by puke & cry at 3:52 PM on August 6, 2008


That should be "Not that I mind". Sorry, I have a cat sleeping on me.
posted by puke & cry at 3:52 PM on August 6, 2008


What a beautiful woman- I found her last update on July 31st particularly moving.

Puke & cry, I think the ethnic minority thing is because so few of the people in the registry are minorities. Something like 67% are caucasian, and for someone to be a "match" they have to be very close genetically to the patient- that's why siblings are the best match.

Though I doubt that I'll be able to help her (different ethnicity), this post prompted me to make a plan to go to one of the local drives, too.

One surprise in the FAQs- I'd always thought bone marrow donation was an incredibly painful process, and until now I'd thought that extracting the marrow involved piercing the bone with a needle. Their description of pain on the level of flu-aches left me very surprised, as does the process of inducing marrow cells out of the bones and into the blood.
posted by arnicae at 4:37 PM on August 6, 2008


Michelle's husband is a good friend of mine. Thanks for posting this.
posted by mullacc at 4:44 PM on August 6, 2008


On the whole Project Michelle story - apparently she found a match, but I'm not sure it was permitted since the match was from a man who had sex with another man since 1977.
posted by Craig at 4:55 PM on August 6, 2008


Why do you have to be an ethnic minority to order a home kit? Not hat I find, since I am but I found that odd. Anyway, I'm gonna order one.

Ethnic minorities are very underrepresented in the registry. My mail-in kit was paid for by a local non-profit foundation whose mission was to get more Asian people to register. From what I gathered the kits are fairly expensive (I want to say $20?). The site I ordered from specifically asked that you be sure you really want to register before ordering a kit, because every unreturned kit took money out of their pocket. There are drives where you can register for free, but I couldn't get out to one at the time.
posted by danny the boy at 4:59 PM on August 6, 2008


For a tax-deductible $52, anyone reading this thread can order a bone marrow test kit online here to swab your cheek at home and mail the kit back to the registry.

(Well, almost anyone. You need to be between 18 and 60 years old, and pass a few other health-related criteria.)

The site linked above, GiftOfLife.org, is specifically focused on trying to increase the pool of potential ethnically-Jewish matches, but they'll be happy to test anyone of any ethnicity, because all the information they receive ends up in the same big North American donor database anyway. And, as mentioned upthread, people from minority group or mixed-ethnicity backgrounds -- especially if you have an unusual mix -- are especially needed to apply!

Please sign up?
posted by Asparagirl at 5:32 PM on August 6, 2008


One surprise in the FAQs- I'd always thought bone marrow donation was an incredibly painful process, and until now I'd thought that extracting the marrow involved piercing the bone with a needle. Their description of pain on the level of flu-aches left me very surprised, as does the process of inducing marrow cells out of the bones and into the blood.

This is what I meant by "self-generated fear" I NEVER had the idea that bone marrow donation was incredibly painful until the bone marrow people went through great pains to tell me it wasn't! It was this process of trying to figure out why everyone was freaked out, reading in between the official lines, and trying to make sense of it all that delayed me from registering.

I think the collective bone marrow people really need to get someone good to work on their PR. That's what's going to get people to register, not free kits. I mean this is probably the best chance I will ever have of SAVING SOMEONE'S LIFE; that's a lot more meaningful than what I would have spent $25 or $50 on.
posted by danny the boy at 5:42 PM on August 6, 2008


danny the boy, the media handles everything it can with "if it bleeds, it leads," so they love to write about bone marrow stories playing on out-of-date fears. Which means the registries have to try to reassure people, which creates a vicious circle of reminding people of what's no longer true.

I registered by mail. It was about as simple a thing as I can imagine. I've done the research. Donating is much easier than it used to be. The reward? If you're lucky enough to be called on, you get to save someone's life.
posted by shetterly at 8:55 PM on August 6, 2008


danny the boy, apologies if my second paragraph sounds like it's directed at you. I meant it for folks who haven't registered yet.
posted by shetterly at 8:57 PM on August 6, 2008


Sold. I'm registering.
posted by raevyne at 9:02 PM on August 6, 2008


Argh. "Insulin-dependent diabetes is not acceptable." (Yeah, I feel that way too.) So much for registering...nobody wants my bodily resources. (I don't blame them, but still...)
posted by ilana at 9:47 PM on August 7, 2008


Don't forget to keep your contact information up-to-date. You can't save that life if they can't still find you.
posted by phrits at 3:54 AM on August 8, 2008


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