Stem Cell Awareness and The Black Community
November 11, 2009 9:17 AM Subscribe
Stem Cell Awareness and The Black Community "Due to genetic variance, 1 in 500 Europeans need to be on the registry, but 1 in 10 Africans should be on the registry worldwide..." 5 Fast Facts on Bone Marrow Registration and Donation. If you want to find out more about whether you can save a life, visit Be The Match (US), OneMatch (Canada), or the Anthony Nolan Trust (UK).
Does the US still charge you to be on the registry if you're a white guy? Despite being a frequent and vigorous blood donor, I always refused to do the marrow thing because I objected having to pay for it.
They frequently have free sign-up periods at Be The Match, about 1 every two months or so that will last for about 3 weeks, so if you keep checking back you can probably find a free sign up time. I when I decided to shell out the $100 and sign up, it just happened to coincide with a free registration period so don't give up!
posted by julie_of_the_jungle at 9:42 AM on November 11, 2009 [1 favorite]
They frequently have free sign-up periods at Be The Match, about 1 every two months or so that will last for about 3 weeks, so if you keep checking back you can probably find a free sign up time. I when I decided to shell out the $100 and sign up, it just happened to coincide with a free registration period so don't give up!
posted by julie_of_the_jungle at 9:42 AM on November 11, 2009 [1 favorite]
That's good to know, but I'm in Canada now where I don't think they charge anyone. So I should just go and do it -- no excuses!
posted by the dief at 9:49 AM on November 11, 2009
posted by the dief at 9:49 AM on November 11, 2009
Does the US still charge you to be on the registry if you're a white guy?
Or a white lady, but they get grants pretty frequently to let people sign up for free and then you're signed up for life. I signed up recently after a MeTa marrow drive and I'm happy I did.
posted by jessamyn at 9:49 AM on November 11, 2009
Or a white lady, but they get grants pretty frequently to let people sign up for free and then you're signed up for life. I signed up recently after a MeTa marrow drive and I'm happy I did.
posted by jessamyn at 9:49 AM on November 11, 2009
Previous MeFi posts about bone marrow donation:
From 2008: 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.
From 2007: Sign Up To Be A Bone Marrow Donor Without Leaving Your House On this day of love, do something great for the human race and sign up to to be a bone marrow donor. For a small fee, Gift of Life will send a registration kit to your house, so you don't even have to leave your chair.
From 2002: Alana Dung passed away quietly in her sleep at age 3 from leukemia, but not before inspiring 30,000 people in Hawai'i to register themselves with The National Bone Marrow Registry. Since her parents and brother were not marrow matches, her family made her battle public. To honor her memory, they eventually formed the Alana Dung Research Foundation, an organization dedicated "to support research efforts designed to improve the quality of life for children with serious illnesses." Her brief life also inspired a play. Is your marrow registered?
posted by shetterly at 9:58 AM on November 11, 2009
From 2008: 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.
From 2007: Sign Up To Be A Bone Marrow Donor Without Leaving Your House On this day of love, do something great for the human race and sign up to to be a bone marrow donor. For a small fee, Gift of Life will send a registration kit to your house, so you don't even have to leave your chair.
From 2002: Alana Dung passed away quietly in her sleep at age 3 from leukemia, but not before inspiring 30,000 people in Hawai'i to register themselves with The National Bone Marrow Registry. Since her parents and brother were not marrow matches, her family made her battle public. To honor her memory, they eventually formed the Alana Dung Research Foundation, an organization dedicated "to support research efforts designed to improve the quality of life for children with serious illnesses." Her brief life also inspired a play. Is your marrow registered?
posted by shetterly at 9:58 AM on November 11, 2009
Dittoing Jessamyn's comment about it feeling good to sign up. The kit for doing it at home is really easy to use. Takes a couple of minutes to get the cheek swabs, then you put them in the prepaid return envelope. It's almost as easy as Netflix.
posted by shetterly at 10:01 AM on November 11, 2009
posted by shetterly at 10:01 AM on November 11, 2009
then you have to remember to keep them updated if you move.
Yes, definitely remember to keep them updated. I signed up in college and have since moved and changed names. They went down my contact list and called my mother who was able to give them my updated number. I'm a potential match for an infant with leukemia and I went in recently for the second round of type matching. If my mother had changed her phone number from 7 years ago, then a potential match might not have been found.
Does the US still charge you to be on the registry if you're a white guy? Or a white lady
When I signed up it was something like $50. I figured, I take time out of my life to give blood every 2 months, why not spend a small amount to be able to make a large difference in someone's life.
posted by lizjohn at 10:31 AM on November 11, 2009
Yes, definitely remember to keep them updated. I signed up in college and have since moved and changed names. They went down my contact list and called my mother who was able to give them my updated number. I'm a potential match for an infant with leukemia and I went in recently for the second round of type matching. If my mother had changed her phone number from 7 years ago, then a potential match might not have been found.
Does the US still charge you to be on the registry if you're a white guy? Or a white lady
When I signed up it was something like $50. I figured, I take time out of my life to give blood every 2 months, why not spend a small amount to be able to make a large difference in someone's life.
posted by lizjohn at 10:31 AM on November 11, 2009
Dasein, there was no blood involved with the home kit. You just put a few swabs in your mouth. Less nuisance than brushing your teeth.
posted by shetterly at 10:52 AM on November 11, 2009
posted by shetterly at 10:52 AM on November 11, 2009
Hmm. Does anyone know why some countries use cheek swabs and some use blood samples? Is one cheaper or a tiny bit more accurate?
posted by shetterly at 10:53 AM on November 11, 2009
posted by shetterly at 10:53 AM on November 11, 2009
So how does this work? Do you have to take time off from work to get the additional tests? If it turns out you're a match, and you're the BEST match, do you have to fly to the patient? Do you have to spend time in the hospital? Is there scarring when they remove bone marrow or can they draw it like blood?
I don't even get sick days so I don't want to commit to something and then bail out at a later stage.
posted by exhilaration at 10:54 AM on November 11, 2009
I don't even get sick days so I don't want to commit to something and then bail out at a later stage.
posted by exhilaration at 10:54 AM on November 11, 2009
Hmm. Does anyone know why some countries use cheek swabs and some use blood samples? Is one cheaper or a tiny bit more accurate?
I would imagine that the cheek swap is cheaper to send out and less invasive, but also more prone to foreign contaminants that would spoil some samples, whereas the blood-draw would probably have to be done at a center by a phlebotomist, and the needles are a bit more expensive to produce than q-tip swabs. But, IANAD, so there's that.
posted by FatherDagon at 11:29 AM on November 11, 2009
I would imagine that the cheek swap is cheaper to send out and less invasive, but also more prone to foreign contaminants that would spoil some samples, whereas the blood-draw would probably have to be done at a center by a phlebotomist, and the needles are a bit more expensive to produce than q-tip swabs. But, IANAD, so there's that.
posted by FatherDagon at 11:29 AM on November 11, 2009
exhilaration, I see you're in New Jersey, so this page of US info might be useful. In particular: "There are two ways to donate. The majority of donations do not involve surgery. The patient's doctor most commonly requests a peripheral blood stem cell (PBSC) donation, which is non-surgical and outpatient. If the patient's doctor requests marrow, marrow donation is a surgical procedure, usually outpatient. "
So odds are that if you were a match, you would go to a local hospital for a non-surgical, outpatient procedure.
If circumstances force you to bail, you bail. People understand that.
As for work, they might not give you sick days normally, but to save a life, I bet they would make an exception. Even if they're heartless bastards, they would have to know it would be lousy publicity for them if they didn't.
posted by shetterly at 11:46 AM on November 11, 2009 [1 favorite]
So odds are that if you were a match, you would go to a local hospital for a non-surgical, outpatient procedure.
If circumstances force you to bail, you bail. People understand that.
As for work, they might not give you sick days normally, but to save a life, I bet they would make an exception. Even if they're heartless bastards, they would have to know it would be lousy publicity for them if they didn't.
posted by shetterly at 11:46 AM on November 11, 2009 [1 favorite]
PBSC is like platelet pheresis: it takes a little while to run, during which you sit in a chair and they usually let you watch a movie or something. In general, donors like this get pretty good treatment from the blood bank staff. :7)
Some folks are skeeved out by having a needle in each arm and a humming centrifuge in between, but if you "close you eyes and think of England" (i.e., concentrate on the fact you're saving someone's life) I think anyone could get through it.
I registered some years ago, and I must say they have been more persistent and accurate about following my address changes than any other organization I can think of -- which is fine by me.
posted by wenestvedt at 11:55 AM on November 11, 2009
Some folks are skeeved out by having a needle in each arm and a humming centrifuge in between, but if you "close you eyes and think of England" (i.e., concentrate on the fact you're saving someone's life) I think anyone could get through it.
I registered some years ago, and I must say they have been more persistent and accurate about following my address changes than any other organization I can think of -- which is fine by me.
posted by wenestvedt at 11:55 AM on November 11, 2009
I signed up for free a couple of years ago when a young boy in our community was looking for a match. He ultimately did get a match and after two transplants is currently doing great!
posted by garnetgirl at 11:57 AM on November 11, 2009
posted by garnetgirl at 11:57 AM on November 11, 2009
Dr. House has forever tainted my openness to giving a bone marrow donation (I mean fuck, does it look painful).
posted by tybeet at 1:57 PM on November 11, 2009
posted by tybeet at 1:57 PM on November 11, 2009
tybeet, on Dr. House, it's dramatic license. I've read accounts of people who've had the surgical procedure, the less common choice, and they were all back at work in a few days and saying they would do it again if they could.
posted by shetterly at 5:14 PM on November 11, 2009
posted by shetterly at 5:14 PM on November 11, 2009
I got all the way to where they ask you for your birth date Social Security number etc. but sorry. Thats just not a cool thing to ask for on the internets, whatever the context
posted by Fupped Duck at 6:41 PM on November 11, 2009
posted by Fupped Duck at 6:41 PM on November 11, 2009
I got all the way to where they ask you for your birth date Social Security number etc. but sorry. Thats just not a cool thing to ask for on the internets, whatever the context
Presumably they do so they can be sure of finding you if there is a match 15 years from now when none of your contact information matches.
posted by atrazine at 10:37 PM on November 11, 2009
Presumably they do so they can be sure of finding you if there is a match 15 years from now when none of your contact information matches.
posted by atrazine at 10:37 PM on November 11, 2009
Fupped Duck, if you don't want to contact them online, you can see if there'll be a local event in the US here or call or write one of the local centers listed here.
posted by shetterly at 11:25 PM on November 11, 2009
posted by shetterly at 11:25 PM on November 11, 2009
on Dr. House, it's dramatic license.
Seven Pound was also a pile of crap about organ donation. Wil Smith did a huge dis-service to stem cell and organ donation with that movie.
Excellent links Shetterly.
Re blood testing vs cheek swabs: Per the staff at the lab I work with -blood is the easiest for them to get cells from-but a hassle for people to go into a lab. Cheek swabs are very easy for people to use, and inexpensive. Sometimes they get swabs without good cell samples though. Saliva kits are growing in popularity because they get good cells, but they are more expensive than swabs. So swabs are the name of the game in mass screening programs.
BTW: One of the people who registered in the Alana Dung drive did match someone else-one of my patients-who is alive and well today. You may not match the person you want to match, but you may match someone. Joining is cheap and easy. There is really no downside. And how many chances will we ever have to actually save someone's life?
IAASCTC (I Am A Stem Cell Transplant Coordinator) but IAN.....yeah, you get it.
posted by SLC Mom at 8:16 AM on November 12, 2009
Seven Pound was also a pile of crap about organ donation. Wil Smith did a huge dis-service to stem cell and organ donation with that movie.
Excellent links Shetterly.
Re blood testing vs cheek swabs: Per the staff at the lab I work with -blood is the easiest for them to get cells from-but a hassle for people to go into a lab. Cheek swabs are very easy for people to use, and inexpensive. Sometimes they get swabs without good cell samples though. Saliva kits are growing in popularity because they get good cells, but they are more expensive than swabs. So swabs are the name of the game in mass screening programs.
BTW: One of the people who registered in the Alana Dung drive did match someone else-one of my patients-who is alive and well today. You may not match the person you want to match, but you may match someone. Joining is cheap and easy. There is really no downside. And how many chances will we ever have to actually save someone's life?
IAASCTC (I Am A Stem Cell Transplant Coordinator) but IAN.....yeah, you get it.
posted by SLC Mom at 8:16 AM on November 12, 2009
Signing up for the bone marrow donor registry is an excellent, and very easy, thing to do. I just mailed my cheek swab kit in 2 days ago.
My dad is actually about to get a bone marrow transplant. He was fortunate -- they have found a "10 out of 10" match for him -- so we are hoping for good results.
posted by Artifice_Eternity at 10:41 AM on November 13, 2009
My dad is actually about to get a bone marrow transplant. He was fortunate -- they have found a "10 out of 10" match for him -- so we are hoping for good results.
posted by Artifice_Eternity at 10:41 AM on November 13, 2009
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posted by the dief at 9:23 AM on November 11, 2009