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Thread: Stem Cell/Bone Marrow Donor Registration

  1. #1
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    Stem Cell/Bone Marrow Donor Registration

    Namaste,

    Through some chance encounters, I was recently sensitized to the need of South Asians in North America to register for the stem cell donation.

    As a brief introduction to this malady, many people develop blood disorders like leukemia. They lose the ability to produce red and white blood cells as well as the platelets. The only chance they have for survival is a stem cell transplant. In most cases a matching donor will be from the recipient's own ethnic group. So, although there are over 12 million donors signed up with the US national bone marrow donor registry, South Asians constitute less than 2% of the total. This puts South Asians with blood disorders at a great risk as their chances of finding a matching donor are limited. If you are in the age group 18 to 44, it would be nice to look for a bone marrow registration drive in your area and to go and register. For registration, one just has to fill out a form and provide cheek swabs. There isn't a blood test involved for registration. If you are fortunate and become a match for someone, now or in the future, then they look for compatibility by conducting a higher level blood test and determine if you could be a donor. What a tremendous opportunity would it be to save a life just by donating some stem cells from your blood, which regenerate in a healthy human being in a matter of few weeks.

    I was given some websites for the local organizations which act on behalf of the national organization. Here are the links,

    For New York/New Jersey area, http://samarinfo.org/
    For Los Angeles area, http://a3mhope.org/
    For San Francisco area, http://www.aadp.org/
    The national Be the Match link, http://bethematch.org/

    In Canada,
    One Match program link, https://www.blood.ca/CentreApps/Inte...p=OMSplashJoin

    The targeted age group in Canada is 17 to 35. Below is a short video to show you the registration process.
    https://www.facebook.com/video.php?v...type=2&theater

    Feel free to ping me for additional information.

    Pranam.
    Last edited by Believer; 07 November 2014 at 02:55 PM.

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    Re: Stem Cell/Bone Marrow Donor Registration

    Namaste,

    Some more information that I got on this is that if for some reason the actual donation process cannot take place in one's own home town (maybe because of lack of a proper hospital) , then the National Bone Marrow Registry takes care of all the travel expenses involved in going to a place where the stem cells harvesting can be done. This includes airfare and hotel stay. So, no one has to spend any money from their own pocket for travel to be a donor. Saving the life of a fellow South Asian with just a small donation of stem cells without any pain or discomfort to the donor would be a wonderful opportunity for any individual, specially spiritually inclined souls. Also, if you are fortunate and ever become a match for someone, then you can set your own schedule for donation - if you are in the middle of your college semester, you could opt to wait till the end of the semester to be the donor, or if you are in the middle of a vacation, you could finish your vacation, get back into the swing of things and then go in for donation. In other words, it is done at your convenience. And most employers will give you time off to go for the actual donation.

    Pranam.
    Last edited by Believer; 07 November 2014 at 02:56 PM.

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    Re: Stem Cell/Bone Marrow Donor Registration

    Namaste,

    There are endless discussions about the virtues of ahimsa and its importance in Hinduism. Yet when it comes to practicing it, there is dead silence.

    In the traditional sense, ahimsa is used only in conjunction with non-human lives. But consider this, if a human being dies right in front of you while you have the capacity to save him without any harm being done to you, is that not himsa and a violation of the noble code of conduct that so many of us cherish and follow. I know there are quite a few youth of the South Asian descent in the forum who might become a match for another south asian with a blood disorder and be in a position to save a life. Why is there complete silence in this group? If an opportunity to do seva falls in your lap, why push it back?

    Study of scriptures and discussions of the Hindu philosophy are fine, but seva is the practical outgrowth of that. Ideally, a student of religion would absorb the concepts and apply them to real life, not just learn them for the sake of an intellectual discussion in a forum.Why is this follow up to learning the religious principles missing? Why would people be silent partners in carrying out himsa of another human being by standing on the sidelines? How has learning about our religion uplifted us if we fail to render seva to a fellow human being?

    I urge the younger south asian (ages 18 to 44) crowd in the forum to wake up and take this issue seriously. Extraction of stem cells from one's blood is a simple process in which blood is drawn from one arm, it goes through a stem cell extraction machine, which retains the stem cells and pumps the blood right back into other arm. Just for registering to be a donor in this painless procedure, there should not be any hesitancy on anyone's part. If by a remote chance, you do turn out to be a match for someone, YOU could end up saving a life without much effort and become the hero to someone. It is time to answer the call!

    Pranam.
    Last edited by Believer; 07 November 2014 at 02:56 PM.

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    Re: Bone Marrow Registration Drives

    Namaste Believer,

    Thank you for the thread. This is an important issue especially for people of Indian descent. I too would like to encourage people to sign up for bone marrow. At the very least, people should go out and donate blood. That would be a good step.

    Funny thing whenever I go out for a donation (which reminds me its been a while), people at the lab are somewhat surprised to see a 'minority' helping out.

    I have a friend (non Indian) who actually turned out to be a match for bone marrow and saved someone's life. The process is not without pain but the joy you get at the end is amazing is how he described it to me.
    satay

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    Re: Stem Cell/Bone Marrow Donor Registration

    Namaste Satay,

    Thanks for the endorsement of this cause. But if I may point out a couple of things that give urgency to this cause,

    Donating blood is indeed a good thing to do, but a person could be helped with blood from millions of people. Stem cell donor match could happen only from one in a million people. So, it is quite a unique thing.

    The actual stem cell donation process, as much as I have learned from the literature, involves getting shots for 3-4-5 days to stimulate your body to release more stem cells to the blood stream and then they are extracted via a machine through a process similar to blood donation. The only discomfort is, maybe flu-like symptoms and some muscle/bone pain when they give the shots in preparation for the stem cell donation. There is a one in a million chance of being a stem cell donor match. South Asian registrant numbers are very low as compared to the number of South Asians with blood disorders needing suitable matching donors. The discomfort/pain is nothing as compared to the joy of saving a life. So, the overall experience, as you described from someone who went through it, must be amazing.

    Pranam.
    Last edited by Believer; 31 January 2015 at 09:51 AM.

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    Re: Bone Marrow Registration Drives

    Namaste Believer ji,

    Great cause! I was not aware that Rheumatoid Arthritis, Heart Disease and Insulin dependent Diabetes would prevent the cause... from donating stem cells or bone marrow! I am little unclear on the drive request process for registering. I checked with the drive calendar and I'm basically free to do it any day, however the drive calendar does not indicate any clear location (such as the street address). I will a call to their number and figure it out!

    Thanks & Regards,

    Viraja
    jai hanuman gyan gun sagar jai kapis tihu lok ujagar

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    Re: Bone Marrow Registration Drives

    Namaste Viraja,

    Here are some links of the Recruitment Centers of BeTheMatch all across the nation,

    http://bethematch.org/About-Us/Globa...tment-centers/
    http://bethematch.org/Support-the-Ca...a-local-event/

    Generally the cancer treatment hospitals in every city have annual drives/health fairs. As a last resort, the program's national office bethematch.org should be able to point you in the right direction.

    Pranam.

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    Re: Bone Marrow Registration Drives

    Namaste Believer ji,

    I wrote to SAMAR. I heard from one doctor Ron Jacob, MD who cc'd my mail (requesting info on when and where to come by in order to register) to the Office Director and Coordinator for Boston, MA. I'm waiting to hear from them.

    Thanks for the info on your end too, I will look into it.

    Best regards,

    Viraja
    jai hanuman gyan gun sagar jai kapis tihu lok ujagar

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    Re: Bone Marrow Registration Drives

    Namaste,

    As with everything else, there is a cost involved on the part of the NMDP, the National Marrow Donor Program for each new person registered. Also, a person might not be motivated enough to donate their stem cells, if (s)he ever became a match. Under these circumstances, there is no point in going through with the registration process if there is no real desire to help others in need. First of all the NMDP will be out of $100 for registration expenses and secondly, there is nothing worse than getting somebody's hopes up if there is a match and then the donor refusing to go through with the actual donation process. For the person with the blood disorder, it is like knowing that there is a person out there who could help him/her live, but (s)he must die because that person is unwilling or unable to help. That would be a cruel joke. I just thought that I should point out the futility of registration without the desire/ability to follow up on actual donation, if ever needed.

    Pranam.

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    Re: Stem Cell/Bone Marrow Donor Registration

    Namaste,

    I was given some additional information that I am going to pass along. India too has few registration services with DATRI - http://datriworld.org/index.html - being the largest and the most matured one, and soon to be a partner with the US based NMDP (National Marrow Donor Program). So, young people in India too have an opportunity to be part of this life saving effort across the globe. They too can help other Indians with blood disorders, whether in India or abroad, and give them a chance to live. Whereas people of Indian descent living overseas look to India to find a match among its gigantic population, the reverse is what is happening. With limited awareness and difficulty in organizing and conducting registration drives in India, the Indian registry DATRI is very, very small (65000 registrants) as compared to the US one ( BeTheMatch ) with 12 million registrants. This results in many people in India with blood disorders, finding their donor matches among Indians in North America who are registered with the BeTheMatch. This trend needs to be reversed. And the only way to do that would be by having more young people in India coming forward and registering for being stem cell donors.

    Many people think of stem cell donation as organ donation whereby you donate a part of your body. Nothing could be farther than that - it is not an organ donation program, but the donation of a chunk of one component (stem cells) of your blood, which grows back within a matter of weeks. Granted that there is some muscle/bone pain for some time as a result of the injections given to the donor prior to donation, for stem cell production stimulation. But the pain of the recipient is many fold more in intensity and of much longer duration. What is a little temporary pain/discomfort for a healthy person when it comes to saving a life? So, make a commitment to save a life and sign up to become a potential stem cell donor. DATRI is waiting for you!

    Pranam.
    Last edited by Believer; 07 November 2014 at 02:57 PM.

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