Bone Marrow Donations

[kimpossible]

There is a desperate need for Eurasian bone marrow donors for an 8 year old half Chinese/Italian boy named Enrico.ÝHe was diagnosed 3 years ago with Leukemia, underwent 3 years of intensive chemotherapy and had a relapse about a year ago. His best chance of survival is a bone marrow transplant from a Eurasian/Hapa individual. Please help spread the word -- it could save a life!"

"Finding a match for him is nearly impossible due to his unique hapa heritage and because of the lack of bone marrow donors, especially those of Asian descent (and mixed-race descent)." -- AsianWeek

I don't know about the rest of you but when I head out for some sort of Asian celebration or festival in America I become a big chicken when I see the folks at the bone marrow table. I know it can save lives... and once I started to register after I read a story about a hapa girl my age that desparately needed a match. But after I called and got the info on the procedure, I got scared. I didn't want to risk the intrusion on my spine.

Am I shirking a duty? Should I be more responsible to other hapa? I now run the risk of passing on Hep B, so that has become a convenient cop out for me.

For those who would like to know more, or test for matching, here is a link (http://www.marrow.org/DONOR/steps_of_donation.html). Testing is free for us as we fall under minority or multi-ethnic.

[deez nuts]

This is gonna sound weird coming from me, but you shouldn't feel guilty about it, HH.

P.S. Nice Conan quote.

[thaite]

Why is it everytime I go to an Asian convention or major function there's a bone marrow registry going on?

And no, I consider it volunteering. Saying it's a duty implies that somewhere along the line I owe something. Bone marrow registration is as much my 'duty' as it is my owed obligation to donate the rest of my organs.

[deez nuts]

Originally posted by buoywonder@Sep 23 2002, 02:50 PM
Why is it everytime I go to an Asian convention or major function there's a bone marrow registry going on?

And no, I consider it volunteering. Saying it's a duty implies that somewhere along the line I owe something. Bone marrow registration is as much my 'duty' as it is my owed obligation to donate the rest of my organs.
Because BW, asians statistically have the lowest organ donation rate. When it comes to matching organ donor to the recipient every factor goes into account to minimalize the body's rejection from the transplant, that includes everything from blood type to race/ethnicity.

And bone marrow transplant is one of the more fickle and trickier transplant procedures. There is generally a low registry when it comes to bone marrow because it is tedious and daunting for the donor screening process, let alone the transplant procedure for the donor. So, imagine with a low registry overall and an even lower asian bone marrow registry, how hard it would be for an asian (full asian or mixed asian) to make that specific match.

I'm not saying it should be perceived as a duty or feel guilty for not doing so, like in the above post saying HH shouldn't feel guilty for not registering, it is your decision. But, it is an issue that the asian community needs to address.



<!--EDIT|Chasiubao_Boy|Sep 23 2002, 05:41 PM-->

[Green_Jade]

i'm registered, the registration process was simple.

now if i ever got called to donate.. and do end up donating in mylife at somepoint... my ass whill be sore..well hip.

[Arex]

I don't think anyone should necessarily feel guilty for not registering or donating for the reasons that buoywonder cited. It should be purely voluntary.

On the other hand, I heard this one story about some guy (or girl?) that was in the database, was notified that he was a match for someone in need, but then chickened out. The donee later passed away. Even though I know it's purely voluntary, this scenario still kinda irked me more than a little bit. I mean, why register at all if you're not fully prepared to donate if called upon to so? Of course, I guess it's still slightly better to at least have the person in the database, just in case they're willing to donate, than to not have the person in the database at all...??

I'm in the database and if called upon to do so, I'd gladly give it up (my marrow, that is) to hopefully save someone's life. I don't think I'd necessarily enjoy it, but I think it'd be cool nonetheless.

Alex

[AliBabaIncorporated]

Originally posted by Arex@Sep 23 2002, 11:16 PM
Of course, I guess it's still slightly better to at least have the person in the database, just in case they're willing to donate, than to not have the person in the database at all...??
emotionally speaking, I wouldn't say so. losing hope for a relative's life is hard. getting more hope and then losing it again is just a kick in the nuts on top of that.

[kimpossible]

My guilt stems from the eurasian specific signage I come across or the cases I read about in the local Asian (English language) newspaper. The gist of it is that since there's no one hapa race of course, hapa have the least chance of matches. Hence the big push.

One thing I'm unclear about are mixed Asian children (approx half and halves - give or take some) more inclined to get leukemia or other diseases that require bone marrow?

[deez nuts]

Originally posted by Hello_Hapa@Sep 24 2002, 11:15 AM
My guilt stems from the eurasian specific signage I come across or the cases I read about in the local Asian (English language) newspaper. The gist of it is that since there's no one hapa race of course, hapa have the least chance of matches. Hence the big push.

One thing I'm unclear about are mixed Asian children (approx half and halves - give or take some) more inclined to get leukemia or other diseases that require bone marrow?
You're right in that Leukemia is lower amongst minority groups with lower case incidences amongst Chinese, Korean and Japanese. The highest incidences show up on European American decent followed by those of African decent. So it is correct that Hapas are more inclined to get Leukemia than those of pure Asian decent. But it is still statistically lower than those of pure European and African decent.


I was part of the Cornell School of Medicine along with Cornell Univeristy in conjunction with the Cammy Lee Leukemia Foundation in an effort to get more Asians and Hapas involved in Leukemia awareness and increase the NMDP registry amongst Asians, last year.

Link to the Cornell University Hapa Student Association in regards to this function

http://www.rso.cornell.edu/hapa/marrow.html

It's an event where they send Oncologists, Radiation Oncologists and Surgical Oncologists from the med School/hospital up to Cornell University in upstate New York to make presentations on behalf of Leukemia.



Link to the Cammy Lee Leukemia Foundation

http://www.cllf.org/default.shtml


Heh see bunboy is not all fun and games! Just gotta be that way in my line of work.



<!--EDIT|Chasiubao_Boy|Sep 25 2002, 08:06 AM-->

[sandra]

just wanted to clarify: so a eurasian patient would need to be matched specifically a eurasian bone marrow donor?

i registered about two years ago. i felt a certain obligation, but immediately after registering, i became very stressed and started having nightmares...i'm chicken too.

[Arex]

Originally posted by kasia@Sep 24 2002, 11:51 PM
just wanted to clarify: so a eurasian patient would need to be matched specifically a eurasian bone marrow donor?

i registered about two years ago. i felt a certain obligation, but immediately after registering, i became very stressed and started having nightmares...i'm chicken too.
Correct me if I'm wrong, bunboy, but aren't the chances of being found a match to someone out there, especially as an Asian, slim to none?

Out of curiosity, why is it that people are so afraid of a little (or a lot of?) pain? Especially in the name of saving someone's life? Or is it more a matter of who you'd be enduring the pain for? 'cause I imagine no one here would have any reservations about donating marrow for their friends or family...??


Alex

[sandra]

Originally posted by Arex@Sep 25 2002, 07:12 AM
Originally posted by kasia@Sep 24 2002, 11:51 PM
just wanted to clarify: &nbsp;so a eurasian patient would need to be matched specifically a eurasian bone marrow donor?

i registered about two years ago. &nbsp;i felt a certain obligation, but immediately after registering, i became very stressed and started having nightmares...i'm chicken too.
Correct me if I'm wrong, bunboy, but aren't the chances of being found a match to someone out there, especially as an Asian, slim to none?

Out of curiosity, why is it that people are so afraid of a little (or a lot of?) pain? Especially in the name of saving someone's life? Or is it more a matter of who you'd be enduring the pain for? 'cause I imagine no one here would have any reservations about donating marrow for their friends or family...??


Alex
i'm scared of pain even if it has to do with my own life...

[deez nuts]

Originally posted by Arex@Sep 25 2002, 02:12 AM
Originally posted by kasia@Sep 24 2002, 11:51 PM
just wanted to clarify: so a eurasian patient would need to be matched specifically a eurasian bone marrow donor?

i registered about two years ago. i felt a certain obligation, but immediately after registering, i became very stressed and started having nightmares...i'm chicken too.
Correct me if I'm wrong, bunboy, but aren't the chances of being found a match to someone out there, especially as an Asian, slim to none?


To quote the Cammy Lee Leukemia Foundation website, because I don't know the exact number off the top of my head:

Of the almost 4 million volunteer donors registered in the NMDP registry, only 7% are Asian/Pacific Islander. The chances of finding a match is between one in 20,000 to one in a million.

The lower end numbers are for those of full asian decent. The higher end numbers of for Hapa's which statistically has the lowest registry in the NMDP. Like I said in general Asians have the lowest NMDP registry.


Kasia, an ideal match would be to match someone of the same ethnicity/race to minimize any unforeseen chances of the body rejecting the transplant. An exact ethnic/race match is not necessary, however the probability of finding one is next to nil. Along with a host of other factors that are involved (too long and complicated to go into) when it comes to all transplants, ideally and statistically the bet chances of finding one and minimizing the body's rejection is from someone of the same ethnicity/race.

For the women, another way to help is to have the ob/gyn save the the blood from the umbilical cord and placenta after you give birth. The blood from the umbilical cord is rich source of stem cells needed to treat cancers, blood and immune diseases such as leukemia. It's a painless and safe procedure, which just entails collecting the blood after the baby is born and clamping the umbilical cord before it is cut. It's a viable alternative to bone marrow.

So bottomline: whether you want to register with the NMDP it's your choice, no one is forcing you, no one will think less of you otherwise, if you don't. But, bear in mind, do your research before you do register. I believe that once you are registered and called to donate, I believe you have a moral obligation, barring any health issues that might have come up for you. It's where I stand morally and ethically (yes I have morals and ethics, contrary to Kasia calling me a corrupt MD :P, j/k).

Sooooo tired now, been up all night in surgery. Sorry, for rambling was a long and depressing night. <sigh> Eight more hours to go!



<!--EDIT|Chasiubao_Boy|Sep 25 2002, 11:21 AM-->

[SunWuKong]

hmmm... that makes me wonder how good a match a person from southern china would be for a person from northern china...

[deez nuts]

Originally posted by SunWuKung@Sep 25 2002, 11:45 AM
hmmm... &nbsp;that makes me wonder how good a match a person from southern china would be for a person from northern china...
Probably stand a better probability of a match of the six human leukocyte antigens with another ethnic Chinese, next best chance probably Asian.

But who knows maybe the HLA match for a Chinese person might be someone from Korea or Japan, might be slim or nil, but not impossible.



<!--EDIT|Chasiubao_Boy|Sep 25 2002, 01:17 PM-->

[Arex]

Wow, that's a lot of information there, CB. You're like one of those informational pamphlets.=)

Alex