Wednesday, March 21, 2012

Register for the National Bone Marrow Registry

I care very deeply about this topic and as a south Asian, would like to do my fair bit. Until five years back, the only thing I knew about bone marrow was that they produce cells in our body - different types of them. I didn't realize the importance of the marrow till I was told to write an article. A day before my editor told me about this, I had told A that there are two Indians who are in urgent need of a marrow transplant as they had Acute Myeloid Leukemia. The next day, my editor said she wanted me to feature one or both of them and their significant others. As a former writer, I have had the opportunity to interview several people - from different walks of life. I think I can say that I've never been as attached to a story as this one. Five years later, I still find myself thinking about the families of Sameer and Vinay. I had interviewed Sameer and his beautiful wife Reena when he was yet to get a match to get a marrow transplant. A lot of south Asian people in the United States may know of these brave men - who battled leukemia and very unfortunately, succumbed to the disease. I didn't know either of them, or their families. But I was one of the many who used to visit their sites very regularly, and occasionally, still do.

It can be a whole different blog about their fight, their social media strategies, and the campaign strategies that they executed to encourage south Asians to register in the National Bone Marrow Registry. But this blog is about the fact that there are VERY FEW south Asians are registered on this registry. This significantly reduces the chances of finding a match when a person really needs it. Since Sameer and Vinay passed away, there have been several young (even kids) south Asians who have needed a marrow transplant. If more people register, the chances of finding a match go up, which may increase the likelihood of the person surviving as well.

Bone marrow registries are not very well set up in India also. Because of the way our body physiology works, a person of south Asian descent who is in dire need of a marrow transplant will either get the best match from his/ her own family, or someone who is of south Asian descent. Please don't wait for a bone marrow drive to take place in your city's temple or summer fair or any event. You can ask for a kit from the National Marrow donor program. They will send it to you, at no cost. There is no pain at all to register. All it requires is a simple CHEEK SWAB. That is it. When you fill the paper work, keep names, phone numbers and addresses of three people handy. Other than that, you won't need anything.

You may be a match for a person in one month, one year, six years or maybe never. If you are found to be a match and decide to go ahead with helping a patient, you may likely have soreness in your lower back. One reason that south Asians are hesitant to register for the marrow registry is because they fear what repercussions it may have on them if they are found to be a match. Please read these articles to find out more.

If you think you have incomplete information, these articles will help. Another place where you can find valuable information is SAMAR. It is the South Asian Marrow Association of Recruiters. They do a great job of trying to get more south Asians to register. Their website is: Please consider being a part of this registry, and believe in the power to be able to give a person another shot at life.

Here is the article I had written on Sameer Bhatia and his wife.
It has information on cord blood donation also and how it may be used. Pregnant mothers can decide if they would like to donate their precious cord blood to someone who needs it.
Please think about this, and if you would like, please be the next person to join the south Asian registry, or host a bone marrow registration drive. A and I had conducted a drive when we lived in Connecticut. Apart from creating fliers to let people know of the drive, there is little that you have to do. The National marrow Donor Program will send the kits to you, and you have to send the cheek swab samples, along with the respective paperwork back to them. Things like this are not highlighted too often in the news media. I have not urged you as readers to share my blog posts until now. But I do urge this time. Please share this article. Please send to as many people as possible, so more people are made aware of it. And hopefully they will register on the National Marrow registry.

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