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Old 07-14-2009, 08:38 PM   #1
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Default OT- National Bone Marrow Registry- It's easy and you can totally save someone life.

http://www.marrow.org/


First off I want to say that I am into this because my brother is a leukemia survivor. None of us in the family matched but luckily we found a match with a lady in FLA. I am still on the list but have not yet ever been a match.

The problem is not enough people in the database. In fact more people vote for American idol in one week then are in the National Bone Marrow Registry.

What's worst is for our minority countrymen. Very few on the list which makes leukemia even more of a death sentence for latinos and blacks.

Once a year I try to help out and sign up 10 new people to the list. Over last 4-5 yrs I have talked about 30-40 friends into joining the list. You can do it with a simple swab of your mouth.

Here is a story about how tough it is to find a donor.




Seven million people are listed on the registry, but a very small percentage of them are from minorities.

Doctors say that's unfortunate, because ethnic background is key when trying to find a marrow match.

It's Denise Bertholin's wedding day, but instead of getting married in the mountains as she planned, she took her vows in a hospital chapel. Three weeks before her wedding, she was diagnosed with acute leukemia.
Story continues below
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"I just started crying and my fiancÚ came in and just hugged me."

Chemotherapy wasn't effective for Denise. Her doctor, Douglas Smith, said she needed a bone marrow transplant. "For patients who have leukemias that can't be cured with traditional chemotherapy, we look for allogeneic bone marrow transplants in order to try to give them the best treatment to keep their disease away forever," explained Smith.

Allogeneic stem cells are taken from a matched donor. Preferably a family member.

In Denise's case, her family didn't provide a perfect match.

Her next step was to join the national bone marrow registry, but she faced another problem.

She's Latina, and according to registry CEO, Dr. Jeffery Chell, only nine percent of people on the registry are Hispanic.

"The number one reason people don't join the registry is because they don't know about it," Chell said.

For now, Denise waits, hoping that more people of Hispanic origin will register so she can renew her vows in a wedding she's always dreamed of.

Getting your name on the registry is easy.

Joining the registry involves taking a simple swab of the inside of your cheek to determine your tissue type.

National Bone Marrow Registry



Just think how good it would feel to save some little kids life, or anyones life for that matter. You could be a life saver and all you did was get some marrow sucked out, it doesn't even hurt like I used to. Not to many people get the chance to do something like that for another human being, I really hope someday I am a match for someone and I can payback the system that saved my brothers life.
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Old 07-14-2009, 09:40 PM   #2
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I've always wanted to do that. I've never known or even heard where to do it locally. I would also like to know what needs to match. It just seems so odd that family members aren't a match and that some of these families have a new baby to possibly be a match and often they are.
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Old 07-14-2009, 09:57 PM   #3
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My best friend Jay had one. Prolonged his life for two years. Priceless.
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Old 07-15-2009, 01:23 AM   #4
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Gunns what is weird about it is blood type plays no role. My brothers actually has a new blood type now. They call them HLA factors and a certain number have to match. Some matches are better then others. Them more HLA factors that match the less rejection.

I know sometimes things I say on the board don't come off right. I'm opinionated and I guess sometimes I have a lot to learn.

I do no one thing though and thats we can do better then a few paltry million when we are country of 300 million.

I would give anything to have Obama talk about this. Just give a speach and tell Americans he wants them to sign up. I wrote Bush a letter about it but nothing of course. Just seems that with all the causes some star would do a registry marrow drive.

I mean the 2 yrs mecks friend got just the begginning. My Brother like 7 yrs since his transplant. Many people have lived 20-30 yrs.

It's so easy people. Chances are you will never be called, but how good would that feel to be able to save a life. IMO better then hitting the lottery. Unless the kid grows up to win 300 games and 8 superbowls for the Raiders.

All kidding aside my first sticky!!!!!! And honestly the only one that was ever worth it.
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Old 07-15-2009, 01:36 AM   #5
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ALso gunns not sure on the numbers but I think it's like a 50% chance or a little less a family member will match. And then some crazy % that sounds like I couldn't come true. But when there are 11 million, and it's like 1 in a million, you have a shot.......If you are white!!!!!

And thats not racist. I'm saying that we need more Latinos and blacks to do this. The numbers are shamefull and something has to be done about it.

Hopefully a lot of people on the board sign up. I'm going to try and sign up people at my bands next gig as well. You know just mention the website and that it's easy.

Don't wait until it's a family member. It's not like giving a lung, you make the marrow back!!!!!! The risk is almost nothing.

I know some of you will sign up. Too many good people on this board to just blow it off. Who knows one of the Bronco faithfull from the Latino persuasion might just be a match for the girl in that story.

The girl that was my brothers match also adopted special needs kids. She's sort of a rebel and rides motorcycles across the country, a little rough around the edges, and has a big check with the family she refused to cash.

I guess now all the kids have been put into families so she is cruising the country somewhere. The odd life saver roaming the country on a motorcycle by herself. Just trips me out thinking about it.
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Old 07-15-2009, 11:13 AM   #6
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Cut,

My wife is in the process right now, for the exact reasons you stated. She's half-Japanese and not only do they have limited supplies of minorities, same goes (or even less so) for mixed minorities.

Good thread.
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Old 07-15-2009, 11:17 AM   #7
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I'll talk to my Doc during my next visit unless you have a link for info.

For once, a good post by you.

Sorry, I didn't notice the link at first. I check it and due to a medical condition listed (not mental) I do not qualify.

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Old 07-15-2009, 01:29 PM   #8
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Cut,

My wife is in the process right now, for the exact reasons you stated. She's half-Japanese and not only do they have limited supplies of minorities, same goes (or even less so) for mixed minorities.

Good thread.
Yeah they need pacific islander, mixed race, everything but whitey. But that doesn't mean white people should think they don't need to sign up. Everyone should be on the registry if there health allows.

Can anyone come up with one good reason why you wouldn't want to be?
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Old 07-15-2009, 02:00 PM   #9
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Originally Posted by cutthemdown View Post
Yeah they need pacific islander, mixed race, everything but whitey. But that doesn't mean white people should think they don't need to sign up. Everyone should be on the registry if there health allows.

Can anyone come up with one good reason why you wouldn't want to be?
So, if they have all the white people they need, why would a white person need to sign up? Do I understand that right?

Also, say you get called and told that you're needed. What's the process - do you know? Do you fly to wherever the person needing the transplant lives? Are you out for awhile? I vaguely remember someone telling me the process was pretty nasty.

I'd be willing to do it, I think. It would be incredible to know that you helped someone live - even if it wasn't altogether pleasant. But I am as white as white can be.
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Old 07-15-2009, 02:41 PM   #10
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So, if they have all the white people they need, why would a white person need to sign up? Do I understand that right?

Also, say you get called and told that you're needed. What's the process - do you know? Do you fly to wherever the person needing the transplant lives? Are you out for awhile? I vaguely remember someone telling me the process was pretty nasty.

I'd be willing to do it, I think. It would be incredible to know that you helped someone live - even if it wasn't altogether pleasant. But I am as white as white can be.
It's not they don't need more white people, just that they really need black, latino, and mixed race. The more people, the more matches, the more saced lives.

For the marrow transplant you would have to go to where the transplant was taking place. At least that is how I understand it. It isn't however that bad of a deal.

The put you, draw some marrow out of your pelvis, you may feel a little sore after, but 2-3 days back to normal. But that is only needed like 40% of the time. The other way is the simply hook you up to a machine that then filters out the cells they need.

So yes it would take 4-5 days out of your life and require you to travel to the hospital it is taking place at. All of that gets paid for.
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Old 07-15-2009, 11:37 PM   #11
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I just saw a story here in LA/OC on a little girl needing one. It is a 1 in 25k chance and they say you only need a swab of the mouth. They wanted people to go down to that hospital but it is pretty far. Any links on people that are farther away but want to get on the list?
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Old 07-16-2009, 12:13 AM   #12
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Just click on the link and then click the join registry. You can fill out a form and then they send you a kit. You swab your mouth and send it back.

Easy!!!!!!!!!!
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Old 07-16-2009, 10:39 AM   #13
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I had a bone marrow transplant in 2001 got lucky because my sister was a perfect match. Great thread- thanks to all the donors out there.
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Old 07-16-2009, 01:11 PM   #14
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I had a bone marrow transplant in 2001 got lucky because my sister was a perfect match. Great thread- thanks to all the donors out there.
Congratulations!!!!! My brother is going strong since his transplant. Back at work, back being a dad, good times baby!!!!!

God Bless!!!
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Old 07-16-2009, 01:21 PM   #15
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how do you sign up? Do they take a bone marrow sample? Cuz that hurts like ****
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Old 07-16-2009, 01:40 PM   #16
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how do you sign up? Do they take a bone marrow sample? Cuz that hurts like ****
no just go to the link in my first post. You fill out a form to see if you meet the donor guidelines. Then they send you a kit in the mail. You just swab your cheek.

Giving also isnt that bad anymore. They give you anesthetic, stick a needle into pelvic bone and suck some out. But like over half the time they don't even have to do that nowdays. They can actually get cells just filtering out your blood on a machine.

If they go into you and suck it you would feel sore for a couple days, and maybe a little tired from losing so much marrow.
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Old 07-16-2009, 01:41 PM   #17
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how do you sign up? Do they take a bone marrow sample? Cuz that hurts like ****
Don't be a p***Y!!!!!!!!
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Old 07-16-2009, 01:48 PM   #18
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The mouth swab is something I had never heard about. Back when I was put on the list, I had to go to the Red Cross apheresis department and they drew blood samples.

That led to about 120 units of platelets over the next many years. Unfortunately my schedule changed, and I haven't been able to donate platelets in several years.

Often, if you watch the local news or read the papers, they will have a local drive to enroll people. This is often paid for by a fund honoring a sick or deceased patient who needed the transplant.

Forget the time commitment thing, just enroll if you have the chance. You or a family member might be in need someday and you would sure have a different perspective then. Good thread.
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Old 07-16-2009, 05:01 PM   #19
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The mouth swab is something I had never heard about. Back when I was put on the list, I had to go to the Red Cross apheresis department and they drew blood samples.

That led to about 120 units of platelets over the next many years. Unfortunately my schedule changed, and I haven't been able to donate platelets in several years.

Often, if you watch the local news or read the papers, they will have a local drive to enroll people. This is often paid for by a fund honoring a sick or deceased patient who needed the transplant.

Forget the time commitment thing, just enroll if you have the chance. You or a family member might be in need someday and you would sure have a different perspective then. Good thread.

I also got on by being at the hospital my brother was at, and taking blood samples. I think the swab gives them enough information, to then call you in for a real blood work if they think you might be a match.

More has to be done then just a swab, but the swab enough to get you in registry.

Also plattlettes very important. Unfortunately I take a medication that makes me not a good donor for that.
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Old 07-17-2009, 07:14 PM   #20
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I'm not eligible because i've had cancer, too bad
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Old 07-31-2009, 09:51 AM   #21
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This thread really is a microcosm of the problems we have in the bone marrow registry.

More people respond to a thread about a weird creature in Mexico then they do in a thread that could save someones life. People need to re-evaluate their priorities.
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