Here at Sepia Mutiny, we have covered many bone marrow campaigns over the years. As you know by now, South Asian Americans have a 1:20,000 chance of finding a match in the bone marrow registry which is a stark difference to Caucasians who have an 80% chance of finding a match. To put that in terms of numbers, as of Jan ’09 there were 5,408,623 Caucasians in the donor registry, and only 139,460 South Asian donors in the registry. The mutiny has helped to publicize the the Help Vinay & Sameer campaigns, which added 25,000 new South Asian names to the national registry.
But there is a new little girl that needs our help, the precious four year old Maya Chamberlain.
In September, 4-year-old Maya Chamberlin was diagnosed with a rare blood disease known as HLH. Her chances of survival depend on finding a suitable bone marrow donor…. Maya’s mother, Dr. Mina Chamberlin, says her daughter’s illness, hemophagocytic lymphohistiocytosis, affects the immune system. [kpcc]
The reason that makes a match especially tough? She’s half desi.
The pool of potentially mixed-race donors is made even more difficult because blood relatives of patients often don’t qualify, and trying to find a volunteer with the right racial combination can be extremely tough, experts said. Marrow transplants are also more complex than those involving organs. [latimes]
“It’s difficult with Maya because she comes from a mixed genetic background,” Chamberlin says. “I myself am from India and my husband is Caucasian — German and English descent — so the combination of the two is making it more difficult to find a match.”
A donor’s compatibility is based on their HLA — or human leukocyte antigen — type. “And HLA is basically inherited. So the probability of finding a suitable donor is highest among people of your own race,” Chamberlin says.
She says the chances of finding a donor are “pretty low — pretty, pretty low… But it is not hopeless. I mean, I know there is that one person out there.”[kpcc] It’s pretty simple to join the National Marrow Donor Program – you basically just have to be healthy and under the age of 60. Once you are in signed up, you will be in the database forever to be matched if ever needed. The process to sign up to be on the bone marrow donor registry has gotten simpler over the years, all it takes now is a cheek swab. If you haven’t signed up yet, what’s stopping you? It’s easy. All you have to do is register on the marrow.org and they’ll mail you a cheek swab kit. I just ordered a kit for my mom.
The donation process is also less intrusive than it used to be. It is cost free to be a donor, local anesthesia is administered and you will be back to work within a couple of days. You can check out more about the Myths and Facts about being a donor here.
Maya’s situation is currently urgent and stable, but they still have not found a bone marrow donor for her. I would especially like to encourage the half-desis that read our site to join the registry. Who knows, you might be her one in a million match.
Perfect for this blog is information available from SAMAR (South Asian Marrow Association of Recruiters) at samarinfo.org. They hold drives nationwide and individuals or organizations can conduct a drive. The best thing is that there is no cost to become a registered donor with SAMAR. I believe that there is a cost with the NMDP. All info from SAMAR is shared with the NMDP however.
There is no cost associated with NMDP or to sign up for any bone marrow database. All the organization working on bone marrow donation feeds into one large national database.
Half desi here, just registered. Thanks for calling attention to this (again, given that like you said, y’all have often highlighted/engaged such efforts).
I know the need for donors is great and I applaud the effort of SM to bring this to everyone’s attention. I think a serious effort also needs to be made into research regarding why these illnesses are hitting our South Asian American community so hard. I know about 7 South Asians personally (aside from the Vinay and Sameer campaign) who have suffered from bone marrow-related illnesses, leukemia and lymphoma before the age of 30. In addition I know 17 including myself who have survived tumors, cancers, and serious auto-immune diseases at young ages. (These are not from being in support groups or treatment, but just family friends, college friends, relatives etc.) I know my evidence is anecdotal, but I don’t see so much of it in my friends of other races, or my relatives growing up in India.
I tried to register since I’m half-desi too but was rejected for having had sex with a man “at least once in the past 5 years”. As if blood, etc., can’t be tested for HIV and Hep C. In England in the 1970s I was rejected as a blood donor for having lived in a tropical country. In California in the 1990s I was rejected by a sperm bank for having had sex with a man. (In the end my partner and I used other procedures and I now have three healthy children.) The healthcare field is suspect for all sorts of prejudices.
Wow… that’s ridiculous. I had no idea. Imagine all the people that are potential donors that are being missed because of that “rule”. I too agree that medical field has advanced enough to test blood instead of leaving a large segment of population from registering to donate.
Thanks for bringing that to our attention….
They can test blood for a lot of the stuff they screen, including the malaria risks that usually prevent me from donating. But transporting and testing blood is expensive and they’d rather minimize the amount they end up having to throw out by trying to reduce the total amount of “bad” blood they get.
Of course, so far as the gay = HIV thing goes, this isn’t the ’80s and while gay men do still have a higher rate of HIV infection that many other groups, the HIV rate has gone down enough that the donation drives can probably safely stop screening them out. Of course there is a reason it’s a red cross, so don’t hold your breath.
As for lack of South Asian donors, that probably has a lot to do with the fact that the vast majority of our homelands are classified as malaria risks. You can get on the registry just by registering, but the way they get most people is by having them check a box while they give blood. Since anyone who actually goes back to visit family is automatically disqualified from giving blood for like, a year, it’s easy to see why so few of us end up on the registry.
🙁 as a future parent i have worried about this. the closer i get to becoming a father the more worries i start having about these sorts of issues, aside from excitement. i have been told this is not uncommon. interesting point about autoimmune diseases. if the recent reich et al. paper is correct american south asians should have a lot of inbreeding related diseases.
I was disqualified because of my Asthma, or more specifically, because I’ve been hospitalized for it in the last two years. And according to them that means that my Asthma isn’t well controlled. I understand that they have to be through and strict on their guidelines, but, I think having one Asthma attack and being hospitalized for it in the last 8 years is pretty well controlled. The questions could be a bit more streamlined and/or specific. Oh well.
The process of becomming a registered bone marrow donor is free and can be done at home! Please go to http://www.marrow.org to find out how!
Mayas father drew up a .pdf poster about her that also tells how you can become a registered bone marrow donor. Its perfect for printing or for emailing out to your friends! It can be downloaded at: http://www.lifedonors.org/mayachamberlin.pdf
You can also keep up with Maya at: http://www.caringbridge.org/visit/concentrate
I came up as a potential donor match and had my blood test done for the remainder of the matching process. All I know was that the recipient is a ‘4-year-old child’, chances are it might be for Maya. I’m eager to see if I am approved for the donation, can’t wait to help out.
If you are, please let me know!
I would love to be a donor but I was not allowed to register due to chronic back pain due to a buldging L5 S1 and I have to take pain meds. But if that is the problem couldnt that be a minor bump? Please contact me and let me know what or if there is anything I can do to donate bone marrow.
You will be in my prayers.
God bless you.
Pingback: Bone Dry: Amit Gupta and the South Asian Bone Marrow Problem « bann.me
Pingback: Human-Centered Design: Bone Marrow Edition | The Dragonfly Effect
Pingback: Human-Centered Design: Bone Marrow Edition | The Dragonfly Effect