That precious, happy little girl you see above is Nirali. She has Acute Lymphoblastic Leukemia (Thanks, bean). According to the following,
Despite overall improvements in outcome, the prognosis for patients…is poor. Their estimated event-free survival (EFS) is only about 30%. [link]
her life is very much at stake, so the way I titled this post isn’t sensational or an exaggeration of any kind. After losing an Uncle to Leukemia two years ago and having an even closer family member go to the hospital this week because of the looming possibility of cancer, Nirali’s story makes me want to weep.
She needs a bone marrow transplant.
She needs that transplant from someone who is brown.
There aren’t anywhere near enough desis in the National Marrow Program database.
We have no excuse for this.
I am terrified of needles, I’ve said this many times. I avoid flu shots, because I find them so traumatic, but even I sacked up and then felt like the biggest baby for being afraid of the “typing” process which put me in the database of potential donors. Apparently, they’ve even taken care of THAT obstacle; now you can just get your cheek swabbed and that is enough.
Look here for a desi-centric list of opportunities to join the database, nationwide. Go. Give a tiny part of your physical self. And then pray, if you are inclined to do so, that we follow-up this post with some joyful news.
Thanks Anna for calling attention to the Registry. I lost a good family friend of mine a number of years back to leukemia and we got the word out about addin South Asians to the Registry.
Saw this in the News tab and am glad you called it out for a full story. This hit me hard (going to be a dad myself soon), so I’ll do what I can. Will stop by an Edison location on the 27th.
I know i got registered in the bone marrow database 5-6 yrs ago or more. Do the records expire after some time or will my details still be in there? thanks.
they are lifelong… no need to re-register.
p.s. anna, thanks for picking up on the story from newstab… 🙂
There is thie guy named Vijay Mehta that is reallu involved in this: Vijay Uncle
I mean really
I dont know if this could help but MATCHPIA. I met Pia at NJIT and got to know her incredible story and what this couple is trying to do to help further. Its phenomenal
yes, he will also be at the Netip Conference in Chicago over Labor Day, and there will be a Bone Marrow Drive there as well, so if you plan to attend, PLEASE register…
It is heartbreaking to read about such a little cherub. I need to get my cheeks swabbed.
Acutally she doesn’t. It’s just a more likely match.
BTW, if you have already registered be sure to keep your contact details updated with http://www.marrow.org or 1-800-MARROW-2
Will do!
Prince of Insufficient Light:
Thanks for the correction– I saw the following on Nirali’s site and was under the impression that the person HAD to be brown. Your comment makes sense…
the conditional probability of a match will probably be even greater from within her own ethnic community. my recollection is that for marrow matching they trie to get at least 3 genes to align up in a match (there are more MHC loci). since there are many genes, and each of these genes come in many flavors (i think 20 flavors greater than 1% within the population is about right), there isn’t a guarantee you’ll find a within family match. but these flavors are not equally distributed across populations, so the chance of match is far greater within population than without. this is also why half-asian children often need to go to places where there are many half-asian children, because their special combination of asian and european flavors (alleles) isn’t found in either population, but only when they are crossed (e.g., a half-thai half-white child went to thailand and to look for a match since that combination is far more common there).
…and the post has been suitably updated. 😉
old post of mine on MHC. this gives you the theoretical reasons why tissue matching is a bitch.
I registered a long while ago when there was a marrow drive at some cultural event I went to – a few years ago I got called up to donate and went through a number of tests before they decided it was not worth getting a donor (I suspect the little guy didn’t make it). Anyway, you don’t need to fear needles as much these days – there are some facilities that aren’t equipped for newer methods and still want hip extractions, but most places just use drugs. They give you a course for a few days that encourages marrow stem cells to migrate into the blood (a certain percentage does this naturally anyway, this just ramps it up). Then they draw plasma and spin it down. Very easy, no painful process.
If a suitable bone marrow match is found, would the procedure be covered by most insurance carriers? What are the common complications that arise from this? I’m interested in helping, but it’s wise to be aware of possible situations and conditions of contingencies that may arise.
the recipients insurance would handle the costs/paperwork/logistics usually…
complications? really not much, if you are a match, they need bone marrow from you, which is usually taken from the pelvic bone.. (similar to a bone marrow biopsy), it’s a long needle, that they insert into the bone, to get marrow out) it’s a one time thing, under anesthesia and complications include having pain in the area (which is usually tempered by advil/ibuprofen/panadol) for a few days, and a likley bruise to the area….
your own marrow will regrow and complete it’s proliferation in about 3 days or so…
i know a donor, she was 12 when she donated to her baby sister, and she was brave enough to do it, and would do it again if asked… here is her touching story in her own words…
no, same ethnic backgrounds usually match better with each other, similar HLA types are usually from the same ethnic backgrounds.. but it’s like playing the lottery when your own siblings/family members don’t match you… you’re at the mercy of who is included in the registry… which brings me to an ethical debate.. should everyone at birth/voter registration/driverse license/passport be registered and then have the choice to refuse if they are a match? it would lead to more people finding matches… and save tons of lives…however… it’s something to think about.. will never become reality…but it’s a thought that might make some, like myself, ponder….
will never become reality
i suspect cheap genomic sequencing in the next decade or so will become ubiquitous so that doctors can take that into account as priors when prescribing medication or entering into a diagnosis. checking the HLA alleles would probably be included. so, the data in a host of databases will probably be out there within 15-20 years (we’re taking $1000 personalized sequencing within the next 5 years).
(we’re taking $1000 personalized sequencing within the next 5 years).
Not affordable. It must be $150.37 or less.
As long as we’re also correcting facts here, can I point out that the quote you have about the 30% EFS is very misleading. That is only if you have a certain type of ALL. The eMedicine article you quote actually went on later to confirm the numbers that stuck out in my head… ~80% of kids with ALL achieve long-term leukemia-free survival. Regardless, I don’t know what Niali’s specific ALL type is. Moreover, for adults with ALL, the percentage that achieve leukemia-free survival dwindles to 30%. I support everyone going out and getting cross-matched though, as one of the things that led me to becoming a physician was watching my grandmother fight leukemia for a rather remarkable, but arduous, 12 years.
I have gone thru the experience and can attest that its completely pain free (slight discomfort). Takes a bit of time but the reward is totally worth the very little effort you have to put in.
What I found surprising that the HLA type matching process took 90 days. I thought that was too long. I dont know why it should take that long.
RC: kudos to you and your actions!
Hmm..this seems a bit long…was it done in the US? I know if you’re an unrelated donor it takes much longer..but 3 months? I don’t think it usually takes that long.. it might have been the paperwork/processing/insurance fiasco? (guessing here…)
chick pea, The recepient in my case was outside US. I dont know where. So I dont know where the HLY type matching was done. They collected my sample here in the US and than told me that it will take 90 days. Their letter informing that match was found came in around 2 1/2 months, still a long time.
rc:
other countries may do their own testing (after the USA tests are done… ) don’t know… sometimes paperwork BS makes everything delayed…
nevertheless… you saved a life…you are officially annoited my hero of the day! 🙂
To those asking about registry-expiration, I also registered over ten (10) years ago–but I emailed the NMDP and learned that, for the most part, once you’re in, you’re in. To confirm, call or email:
National Marrow Donor Program Shenia Hill – shill@nmdp.org (800) 627-7692 8:00 a.m. to 5:00 p.m. (CST)
To register yourself in the NMDP, call (800) 654-1247.
Anna–so glad you posted this, thank you. Another South Asian man (Parag Patel) is desperately seeking a match, as I’m sure hundreds of others are, as well. Please, an hour’s worth of your time can save another person’s life. Do it.
Indeed… to echo CP… you are a hero.
Well done.
I know this thing requires someone to stick a needle in the bone. I’ve seen the type of needle that’s used. It’s really fat, fatter than what the vets use to penetrate animal hide. It scares the crap out of me. Besides it goes in through to the bone. I keep thinking about the root canal surgery I once had, and I get this congestion around my chest and this cold feeling.
I am part of the national donors’ database – for organs – in case i croak prematurely – … but this stuff really scares me.
but … really… to know that one has given someone a chance to live… what better purpose can there be to life. My favorite bitter-sweet story is that of xander here. sweet because xander lived. bitter because someone else had to dier. Click on this and tell me if you wouldnt get a thousand needles stuck into you just to know you gave this little fighter a whisper of a chance.
so i’m going to take the plunge. For the canadians among us, the canadian blood services manages a marrow registry. The link is here.
Thanks Chick Pea and Hairy_d. I think its privilege that sometimes we get put into a situation where we are able to help someone. Luck plays a huge role.
Ouch.
3/8 Tamil 1/8 Irish 1/2 Cajun French
If I ever get leukemia… well let’s just say, “Goodbye, Mr. Spalding…”
If I ever get leukemia… well let’s just say, “Goodbye, Mr. Spalding…”
well, the flip side is in the case of a super-plague to which much of the human race is vulnerable you are probably pretty safe since your immune profile is rare. but keep an eye out for growing tissues from adult stem cells!
I was wondering if there was one center at San Francisco?
It is a priviledge, and luck/karma/higher force does play a role.. but SUPER HUGE hug from me to you…
Yes the needle is large, but think about it… a needle saves a life…hmmm.. for most people it’s a small thing to suffer through…
and:
Ouch.
Hm… not necessarily..we actually got our HLA type done in medical school for one of our classes… mine preliminary matched with one of my classmates and she was white (don’t know the breakdown of her ethnicity/ies), so we promised to remain in touch for life..since we may come in handy one day (knock on wood it never happens) to each other…
It’s not that you will only match with your race/ethnic background, but chances are higher….I don’t have numbers off hand…
Ofcourse its possible.
Here’s exactly such an example of SAMAR bringing patients and donors togather, when a Desi boy was the patient and a White police office Detective Joe was the donor. here’s the link
So keep your classmates contact handy, if nothing else she can give a referral for a job 🙂 (I dont know if referrals are needed for Doctors or not)
It’s not that you will only match with your race/ethnic background, but chances are higher….I don’t have numbers off hand…
i just googled, and one organ donation site gave the following numbers for tissue matches:
1/4 with a sibling (this makes sense with the number of HLA loci and 1/2 chance of match at a genetic focal point) 1 out of 20,000 in the general population
assuming these numbers are for whites, it probably makes sense to set 1 out of 20,000 a best case scenario for within brown matching. i say best case because the 1 out of 20,000 was probably for white americans, who are mostly northwest european, so their average coefficient of relatedness is probably less than that between any two brown people. the 1 out of 20,000 is probably better for south indians, or northwest indians, or northwest indians. the chance of a match with a white individual is probably well to the north of 1 out of 20,000. extrapolating from the genetic distance of browns and europeans, and trying to use the 1/4 chance with 1/2 genetic relatedeness as a scale, i wouldn’t be surprised if a match with a white person is likely at a clip of 1 out of 50-100,000 (at least). that’s a multiplicative difference.
i’ll post more when i find out more, or, if i have time i could just take HLA profiles of populations and crank out conditional probabilities.
I would request that every blogger put this on their blog so that this reaches the maximum number of people.
I just now saw on sony and zee in the US broadcasting this and making the same request.
great story!
she’s a pimple popper and i’m a cancer killer.. so not a good referral service… ;)…
I donated blood years ago for a bone marrow drive. I guess I wasn’t a match, but I encourage everyone to do so. I am sure it will be a painful process if you are a match, but think of what you could do. Does anyone know of bone marrow drives in Atlanta?
Greetings Oh Fellow Hotlanta resident.. Here is info from you…it is taking place as follows, hope you can make it.
August 27, 2006 Venue: BAPS Swaminarayan Mandir 3518 Clarkston Industrial Blvd. Clarkston, GA 30021 Time: 12-4pm
Hi All –
Just wanted to add my .02 – I’m a Desi doc and molecular biologist (that sound you hear just now is my mother’s head stretching as it bursts with pride) who had a BMT for a bizzare combination of rare blood disorders that hit me out of the blue about 9 years ago. At the time there were almost no brown folks in the registry, and I remember quite clearly the odd feeling of waiting for the results of my brother and sister’s HLA typing, basically knowing that if they didn’t match I was going to die. My parents were overwhelmed and distraught at the whole thing, and my sibs numbed out when I got my diagnosis, and so I spent almost all the time up to that point trying to put a good face on the whole thing, funny but dignified, that sort of thing, so that someone would be capable of making the inevitable hard decisions when we got to them, etc, etc. Quite honestly, the single most emotional moment for me, the one time I allowed myself to really feel the truth of the whole situation, was when I learned that my brother was a 6 for 6 match. It was like a coin had been flipped, and God called it for me. I dropped the phone, and collapsed on the floor, sobbing, and I couldn’t even collect myself enough to tell my family that the news was actually good. As my PhD advisor was fond of pointing out, life is not without risk (although mostly he was referring to some dumb-ass experiment that would never work that he wanted me to do). To see and feel it so starkly, the odds plain before you, is a thing I wish upon no one.
And that is why it is so important to get onto the registry – we can change those odds. Kudos to those of you who have registered or even donated (a double dap for you!) – I can’t tell you how important the effort alone is to those of us who at one time or another had to look for hope.
I’ll add a couple of points. First, there are lots of minor antigens (almost all of them uncharacterized) that play important roles in the actual matching between donor and recipient, and so the best possible match is one that is gender and racially matched in addition to being HLA matched. Don’t be fooled into thinking that our common Indo-European ancestry means that the overwhelmingly white database will work for all of us, and also don’t be fooled into thinking that the (relatively) small outcome benefit of racial or gender matching (independent of HLA matching) doesn’t count clinically – it counts when it counts, and we all can help with that. In other words, brown is best down for brown in real life. Second, I just wanted to touch on the point about how big the needle is, and the fears that accompany thoughts of donation. I’m glad to hear that people are open in talking about their fears – those fears are real, and I really respect the honesty that goes into describing those feelings. Much is made of the “heroic” donor, which is great except that to some extent it denies the emotional and physical costs of donation, costs that are often borne without acnowledgement. From my experience both as the brother of a donor and a clinician, I can only say that the physical pain really is minimal (all done under anaesthesia – my bro was flipping me the bird from my isolation room window 6 hours after his procedure), and that I’ve never met a donor who emotionally regretted helping to save a life.
Hosannas to all of you, and to the site, for reminding us of the importance of this, both for our community and for everyone else. And to all of you who plan to get typed, you should know that in a gray, mushy world, you are doing a thing that is an absolute good. We all owe you our thanks.
OK. I’ve taken the leap and scheduled an appointment for teh blood test. A couple of points to share for the Canadians.
We do not have a cheek swab yet. They will pull 5 ml of blood from you.
the blood pull is scheduled at a lab (MDS) and it’s a walk-in visit anytime from Monday to Saturday.
Canada is part of an international marrow sharing registry. so there is every likelihood you get the call from elsewhere. and it works both ways.
the first step in the process is, for all you keeners, is to go to the web site linked above and step through to the questionaire – and score a 10/10. i like the idea. it makes sure, people are rational and aware of what they are stepping in to when signing up.
So good luck.
Don’t be fooled into thinking that our common Indo-European ancestry
just to be clear, the latest genomic evidence is that there is very little (less than 10% probably) “indo-european” (e.g., central asian aryan within the last 6,000 years) ancestry in the south asian population. so we better not be fooled by myths that we are just “white people with tans.” we aren’t.
since we’re talking fears… here’s one more… the veb-site i just visited sed that the anesthetic can be local or spinal. i am really uncomfortable with needles being stuck in my spine – so can you tell me what is the decision process around the location of the anesthetic. also, what are the common locations for pulling the marrow?
This post has been the most educative of all on SM. Thanks for the ‘saraswati’:)
I’ve meant to register for this for a few years now, and this post finally made me get the process started. I have the forms and plan to fill and mail them today.
People in the U.S.: please note that there is a charge of $52 to get the tissue typing done, payable by check of credit card.
A couple of questions to the doctors in the house:
1) The medical evaluation form asks if we have ever been refused as a blood donor. My company organizes blood drives on a regular basis – folks from Carter Blood Care usually do the actual collection. However, they clearly state that people who have travelled to the subcontinent in the past 12 months should not donate. Since this is a stated policy, I have donated only in the years that I did not travel to India. Does this count as a refusal?
2) They have a clause about Asthma, stating that people who require regular use of steroids to control their asthma cannot become donors. I do have asthma, but it is caused by allergies, and mostly appears in spring. I have not taken Flovent since May. Would this still disqualify me?
Thanks in advance for the answers.
Travel doesn’t mean refusal… I think they are mainly concerned with hepatits, HIV, and other blood borne infections… so if you’ve been refused on the medical ground is what that is likely asking…if you travel to a foreign land (esp third world) you can’t donate for a year.. that is red cross policy….
No, severe COPD, or severe ashtma patients are on tons of steroids… you are free of this from what you write… so you’re a go go go! Green Light… Donate away… Cheers..
From baby Nirali’s site:
I registered with the NMDP by giving them a blood sample in 1997. Its absolutely free. In any stage any time donor doesnt need to spend a red cent.