Saving a life is easy, but I didn’t

Posted: November 14th, 2011 | Author: | Filed under: Uncategorized | 19 Comments »

I was reading Hacker News a few weeks ago and I stumbled on a story: Amit Gupta needs you. It turns out that Amit is the thoroughly likeable founder of Photojojo.  Amit had the double misfortune to:

a) have acute leukemia, and

b) be South Asian.

The problem with the first one is obvious.  The problem with the second one is that the life-saving marrow transplant that Amit needs requires a donor with a similar genetic makeup, and South Asians are dramatically underrepresented in the registered donor pool.

I read the amazing page dedicated to finding Amit a donor, and thought back to 1995.  I was in my second year of college and there was a blood drive.  A representative from the National Marrow Donor Program was there near the cafeteria in the quad while I was donating.  She explained the marrow registry and asked me to sign up to be considered for a match for a marrow transplant.

At the time, the only way to donate marrow was to basically have someone drill holes in your bones and drain your skeleton, which kind of terrified me.  Nowadays, of course, most donations require nothing more than sitting still for a few hours with an IV watching television.  But after a lot of introspection, I decided that it was a rare occurrence in this world that you actually get to save the life of a stranger, and if skeleton-draining was the price of that, then so be it.  I was also reassured that most folks are never matched with anyone.

Back to Amit and the present, it was clear that my genetic makeup wasn’t going to be much help for him.  But I went over to marrow.org and looked around.  I learned that it’s ridiculously easy these days to get tested and not very hard to donate if you’re matched.  Despite this, the need is skyrocketing.  Half of the people who need marrow transplants can’t locate a donor.

Then I realized – crap, how the heck are they going to get a hold of me if there’s a hit?  All they have for contact info is my college dorm address!  I can’t help Amit, but maybe I could help someone else in need.  So I fussed around with the website to update my contact data.  I couldn’t figure out how to find my old record, so I made a mental note to try and call them some time, and gave up.

Allow me to digress one more time before I get to the point.  Five months ago I sold my startup, Sparkbuy, to Google. There were mountains of paperwork, and one bit that didn’t get wrapped up nicely was mail forwarding.  Not email forwarding, mind you, but good, old-fashioned, paper-cut-on-your-tongue-from-sealing-the-envelope mail.  I submitted the change of address request, but for some reason, mail piled up in my old office.  They nagged me about it every few weeks.  I procrastinated. After many months I finally went and picked it up.

Today I was sorting through that mail.

Did you know that, when the marrow donation center finds a match, they try desperately to reach the potential donor?  Even if that person has moved from their dorm room long ago, even if their contact information has changed, even if they’re in a different state, even if 16 years have passed?  They try.  They look all over for ways to reach that person.

Almost 5 months ago, they found a match, and sent me a letter to the only address they could find for me.  To my old company.

Today I read it.

I called immediately, of course.  They said that they’d contact the patient’s doctor right away.  But they told me the odds were good that, since 5 months had passed, “they found another match, or that the patient… is no longer eligible.”

Joining the registry is free and requires nothing more than a cheek swab.  Please join.  If you’ve joined before, please update your contact information.

www.marrow.org

 

(You might want to subscribe or follow me on Twitter so you don’t miss new articles)


  • http://blog.daryn.net daryn

    Amit is a great guy, and it’s because of him that I’ve registered as a marrow donor. I doubt we’re a match, but I hope that if not for him, I will be there when there is someone else I can help. Thanks for the reminder to keep my information up to date! 

    p.s. Any Seattle South Asians (or other Seattleites who want to get on the registry) should come out Tuesday night (11/15/2011) and get swabbed: http://www.facebook.com/event.php?eid=174595119298897

  • http://twitter.com/IamHShah Harry Shah

    Dan, I am a South Asian. I have already joined the registry couple of years back. When Amit’s news came about, I told to myself that I am already registered; so I just followed up with my friends and family to sign up. Didn’t realize until your post to update my address (since I had indeed moved)! So THANK YOU for that.  

  • Anonymous

    Thank you. This was powerful. I just registered.

  • http://twitter.com/shearn89 shearn89

    For anyone reading this in the UK, this is the page you need! http://www.nhsbt.nhs.uk/bonemarrow/index.asp

    They call it stem cell donation over here, but it’s the same process of Peripheral Blood Stem Cell (PBSC) donation…

  • Markoff

    they don’t want us really, story was moving, so I went to the website, everything looks very easy until I found it’s only for people in USA and Portoriko and 5 other countries, like world would be consisting of 6 countries if they are so lazy to list there contacts for as much donation centres as possible

  • http://twitter.com/carterbailey Carter Bailey

    Hi Markoff, if you go to amitguptaneedsyou.com, you can find a list of donation centres in many other countries. I counted 35 countries in the list below:
    http://amitguptaneedsyou.tumblr.com/help-around-the-world

  • http://twitter.com/carterbailey Carter Bailey

    I have been on the fence about requesting a kit for some time now. I wanted to sign up, but, being of Irish descent, I knew that I would not be a match for Amit. After reading this moving post, I took the (very very small) leap and registered for my swab kit. Thank you this.

  • somejan

    I’m a blood donor but I didn’t know about marrow transplant banks. I just registered. 

  • David Miller

    I’m consistently amazed at how slowly the nonprofit world adapts to new technology. Where on the registration form is twitter handle, facebook id, linkedin profile. These are all location-immune ways to reach people, and in this day and age, probably more reliable ways as well. Email is a small step in the right direction – but how much higher would their contact success rates go if they could leverage these social channels to communicate with donors such as yourself? My guess is it would be significant.

  • Bobby

    I recently donated via the PBSC process. For any of you hesitant to do so, please rest assured it is REALLY no big deal, and I am sort of a big wimp when it comes to the stuff. Everyone is super nice and if you’re anxious (or if you’re not even) you get some adavan and you just chill out and watch videos for a few hours.

    So go register wherever you can!

  • http://www.danshapiro.com/blog Dan Shapiro

    Thanks for letting me know.  It’s a small but meaningful consolation that others can learn from my mistake.

  • http://www.danshapiro.com/blog Dan Shapiro

    This is terrific.  There’s exactly two weeks left to get cheek swabs in that can be matched against Amit – if you missed the event tonight or live elsewhere, marrow.org can swab you so you can be considered.  All donors are matched against all pending patients, so if you register now, he (and others) can benefit.

  • http://www.danshapiro.com/blog Dan Shapiro

    Thank you. I’m really glad to hear it.  Here’s hoping for Amit!

  • http://www.danshapiro.com/blog Dan Shapiro

    I’m surprised they don’t take swabs at all blood donation stations! 

  • http://www.danshapiro.com/blog Dan Shapiro

    Thanks Carter.  The odds are long of getting the call (1 in 540 people get to donate) but there’s a lot of Amits (and Finnians) out there to help!

  • http://www.danshapiro.com/blog Dan Shapiro

    There’s many links for different countries in the Hacker News thread at
    http://news.ycombinator.com/item?id=3237281

  • http://www.danshapiro.com/blog Dan Shapiro

    Thanks for sharing!  It’s great to hear firsthand that it’s not as scary as it sounds.

  • http://sidnicious.com/ Sidnicious

    Thanks, Dan. I registered, I’m mailing back my swabs now.

  • RobertinSeattle

    Dan – I only recently learned that there are now new – and much better – ways to generate the compatible stem cells Amit needs. All without the pain and process that accompanies bone marrow extraction. And possibly from his own blood!

    Please, please, please put Amit in touch with me asap!