Remember Amit Gupta? He was diagnosed with Leukimia in September 2011 and thus began the largest social media driven internet friendly bone marrow donor recruitment campaign we’ve seen to date. He has something to share today.

… After over 100 drives organized by friends, family, and strangers, celebrity call-outs, a bazillion reblogs (7000+!), tweets, and Facebook posts, press, fundraising and international drives organized by tireless friends, and a couple painful false starts, I’ve got a 10/10 matched donor! You all literally helped save my life. (And the lives of many others.) [amitgupta]

I am stunned by this good news! As we’ve blogged before, South Asians have a 1 in 20,000 chance of finding a donor match and to find a perfect match is even more of a slim chance. This is one of those circumstances that highlights how social media campaigns can turn into real life successes! Of course, Amit still has a battle ahead of him.

Tomorrow, I’ll be admitted to Dana Farber in Boston for 4-5 weeks.

First I’ll get a second Hickman line to allow direct access to my heart (for meds and for nutrients if I’m not able to eat). Over the next week, the docs blast my body with a stiff chemo cocktail to try and eradicate all traces of cancer cells. In the process, the immune system I was born with, and my body’s ability to make blood, are destroyed.

Next Friday, I get my donor’s stem cells by IV. I start on immunosuppressants to prevent my body from rejecting them (I’ll be on them for 12-18 months). For these weeks I’ve no immune system, so I’m severely vulnerable to viruses and bacteria. My hospital room and hallway become my world.

Meanwhile, the stem cells make their way to my bone marrow and, with some luck, start producing platelets, red blood cells, and white blood cells. At this point, my blood type changes to the blood type of my donor. And my blood will now have my donor’s DNA, not my own. [amitgupta]

I am reminded of Sameer who also had a 10/10 donor match – but unfortunately suffered from complications from the transfer. Amit has a tough battle ahead of him, but he has a large community that is rooting and praying for him. Good luck!

The online art exhibit Skewed Demographic brings together artists to address the racial disparity in the bone marrow registry. Each piece in the online gallery is being auctioned off with proceeds going towards processing bone marrow testing kits.

Photographers Shirin Adhami and Sunita Prasad curated the show in honor of Photojojo founder Amit Gupta and other South Asian leukemia patients. Adhami first met Amit Gupta when both were undergraduates at Amherst College a decade ago. When Gupta first announced his diagnosis and his need for a bone marrow donor, Adhami was one of his many friends who rallied to action.

“Personally, I was working on doing drives and I was thinking of doing a more symbolic gesture,” said Adhami during a recent phone interview. “How could I reach an audience that maybe couldn’t donate marrow? How could it be more than a request for money?”

Adhami decided to put the call out to her contacts to see if they would be willing to donate their work to the cause. “The idea is photo-based, but the artists are not necessarily all photographers. The inspiration is really from Amit’s photo interest,” she said. “There were times that I have not even realized I was using one of his inventions until much later. He has really affected the photo world with Photojojo.”

The show debuted at the Queens Museum in New York last week and now exists solely online. Bidding closes on Monday, December 19, but Adhami says that she continues to receive donated pieces from artists and will keep bidding open for the newer items a bit longer. She estimates that about $10,000 worth of artwork has been donated for the auction.

The bidding process is simple: just email skeweddemographic@gmail.com with the amount you’d like to bid and the lot number of the item. Suggested minimum bids are listed on each piece’s page. As an added bonus, Adhami says one of the artists will send a small print to everyone who bids on an item.

Highlights from the show include this print by Bill Burke and a print by legendary photographer Joe Deal, who passed away from cancer last year. The print was donated by Deal’s widow Betsy and is not currently available anywhere else. Other items up for bid include prints by Jesse Burke, Tom Griggs, and Rebecca Heyl.

Aziz Ansari and his Parks and Recreation co-star Chris Pratt just released this PSA encouraging young people to get their cheeks swabbed for the bone marrow registry.

DoSomething.org’s Give a Spit campaign is specifically targeting young people between the ages of 18-24. The campaign and its partners Be The Match and DKMS “need inspired young people like you to take the lead and register more committed college-age donors, especially minority donors. You can save lives by running a “Give a Spit” drive on your campus. Just sign up and we’ll get you everything you need to run a drive.”

Plus, there are prizes: The drive that gets the most donors signed up wins $2,000 for a celebratory party and everyone who enters the registry through a Give a Spit drive is eligible for a $500 college scholarship.

Readers who are curious about what donating entails should check out Taz’s recent interview with two donors. You should also check Amit Gupta Needs You for a list of drives across the country.

(Via Gawker)

It’s surprising to me after all this time that there are still people not registered in the bone marrow registry. At last week’s San Francisco Subcontinental Drift, I eagerly convinced my friend to sign up to the bone marrow registry at the back table, surprised that he hadn’t done so already. “I’ve been in the registry for 7 years,” I told him. “All it takes is 4 simple cheek swabs and you are in.” Within minutes, he was in the registry too.

But what is it like to actually donate? That I didn’t have experience in. I do know that if I ever get the chance to donate, I’ll be 99.9% willing to step up to the call of duty. I decided to interview two South Asian American women who had the opportunity to donate bone marrow, Kristeen Singh and Darshana Vakharia. Here’s what they have to say:

Congratulations! When did you do it and what was the overall experience like?

Kristeen: Almost a year ago (Dec 14, 2010), I donated bone marrow for a seventeen year old boy with Leukemia. I was told that the recipient was the same age as my nephew, so it was natural I wanted the same for this boy. As a donor it feels like yes, we are doing it, and yes we are life savers.

Darshana: I donated in January 2004.  When I donated all I knew was that it was for a little girl who was 9 years old.  My oldest daughter was exactly the same age at that time.  Needless to say I couldn’t do the procedure fast enough.  All I remember right now is how lucky I felt that I was a match and was actually donating.

When you got the call that you were a bone marrow match, what was your decision making process?

Kristeen: I was in disbelief that I was actually called. It wasn’t until I had my blood tested that confirmed I was the best match that, I believed it. I was excited that during the holiday season, I would get to share the gift of life.

Darshana: The decision was already made for me when I registered to be a donor in  ‘92 .  However I had to figure out the logistics of dropping off and picking up my girls to and from school who were 9 and 6 at that time.  City of Hope was a big help.  They sent a Limousine to pick me up, (which was pretty cool) so that my husband could drop off the girls and then come to the hospital.  And I wasn’t scared.  I Just prayed that the patient was strong enough to receive the marrow  and that the transplant would be a success.

Do you know the person that you gave bone marrow to?

Kristeen: I hope to one day find out. I know it is a 17 year old boy that lives in another country. After one year, if both parties agree, you can connect. Either way, I know that part of me is with him always and forever.

Darshana: No.  Privacy is a big issue.  Both parties have to sign consent forms agreeing to do the procedure.  On the form itself only the sex and the age of the patient are mentioned.  Also you  are counseled about the procedure and  they prepare you to face the consequence that, sometimes, in spite of everything, the patient might not make it.  City of Hope calls to let the donor know , after a couple of weeks, whether the patient is doing well or not.

How long were you in the hospital for? How long did it take before you fully recovered?

Kristeen: I had a choice of either doing the PBSC or marrow procedure.  70 percent donate using PBSC, but I decided on the marrow procedure. I felt soreness in my lower back, but I can’t even imagine what pain the  patient was going through. It was pretty cool that at the end they took my marrow and it was taken to be infused in the patient.

Darshana: I was supposed to be discharged the same day but my blood pressure was a little low and I had to stay an additional day.  However, normally you are discharged the same day.

Truthfully, how much pain were you in?

Darshana: Like Kristeen said, I too was sore for a few days and was advised by the doctor to keep walking and that would alleviate the soreness.  Frankly, if you’ve had children, then this feels like a sprained ankle

Did you have health insurance? Who covered the cost?

Darshana: I do have health insurance but I was not responsible for any of the costs, of the procedure itself, the preceding tests or the after care.

How did you initially get listed in the bone marrow registry?

Darshana: I initially got involved with Asians for Miracle Marrow Matches because my best friend’s cousin was suffering from Leukemia.  We had a drive for her at my place, where we registered almost 25 -30 people including myself.  While we were registering people at my home, my friend called to say that her cousin passed away.  They did find her a match but that person lost his nerve at the end and did not agree to donate.  I mention this only to point out that if a person is not sure whether he/she wants to go through with the procedure he/she has a choice right until the very end, before they give you anesthesia (as in my case of a marrow procedure).  I have volunteered with A3M  since that day in my house until the last couple of years.

Would you do it again?

Kristeen: Absolutely

Darshana: In a heartbeat.

Kristeen, you used to work to encourage South Asians to join the bone marrow registry as the South Asian Outreach Coordinator with Asians for Miracle Marrow Matches (A3M) a few years ago. I felt that it was somewhat serendipitous that you were asked to be a donor. What was that like?

Kristeen: It was a wonderful irony that I was contacted to donate. In ’06, I got hired and the first thing I did was register. In September of 2010 I was contacted by A3M and told I was a match. Registering South Asians from all religions between the ages of 18-60 has brought people together to save lives. Those I met and connected with, and the many thousands that registered to save lives, give me faith in the power of community.

Kristeen, you were working with A3M when the Save Vinay & Sameer campaigns happened. Later in a blog you stated that 24,611 people registered in the 3 month span of the campaign, and that 266 were matches. How do you think the campaign was able to be so successful?

Kristeen: Those numbers are from the book Dragon Fly Effect. The campaign was led by Prit Radhakrishnan, Vinay’s good friend. In the beginning Vinays friends, family, and community, all come together to start this campaign. His family and Radhakrishnan launched “Team Vinay” with the goal to register 20,000 people of South Asian descent as fast as possible. Some time later  Robert Chatwani, one of Sameer‟s friends mobilized “Team Sameer.” The two teams joined and a power team was created.

In Southern California I was working with Vinay’s family mostly. There was definitely a lot of project management, marketing, logistics, and planning. All the recruiters and staff from A3M were on board and all really helped. I have never worked so hard at anything in my life. You really can’t stop because someones life is at stake. I feel like the main reason people registered was the story and messaging that both teams created. They did a great job of sharing the story so that everyone could see themselves connected to Vinay or Sameer. People felt that Vinay for example could easily be their brother, husband, son or father. People made Vinay and Sameer’s cause their cause.There were tons of dedicated volunteers and every temple, mosque, gurdwara, south asian fraternity, business group, organization came together. In Southern California we were able to register 5000 people.

When I was at the hospital donating my marrow, I was informed that many more South Asians are coming up as matches at that hospital than before and are moving forward. That makes me feel good.

Why do you think it’s important that South Asian Americans join the bone marrow registry?

Kristeen: Because you can save people like Amit Gupta. Also, if someone you know or your family needs a match, this registry will be there for you too. Every year many South Asian patients are diagnosed with blood-related diseases. In order to survive, patients need a bone marrow transplant from a matching donor. Nearly 30% of patients will find a matching donor within their families. The remaining 70% must search for an unrelated donor. Unfortunately, a very small percentage of South Asians (Indians, Pakistanis, Sri Lankans and Bangladeshis) are registered to be marrow donors. South Asians comprise approximately only 2% of the National Marrow Donor Registry.

What kind of illnesses require a bone marrow transplant?

Kristeen: The following diseases are the ones that most commonly benefit from bone marrow transplantation: leukemias; severe aplastic anemia; lymphomas; and immune deficiency disorders. However, patients experience diseases differently, and bone marrow transplantation may not be appropriate for everyone who suffers from these diseases.

Darshana, I know that you have been in touch with who you donated to. Have you been able to stay in touch with them?

Darshana: Unfortunately not.  We are facebook friends but I felt that it should be their choice if they’d like to keep in touch.  They know where to find me.

What would you tell someone who isn’t listed in the bone marrow registry yet?

Darshana: Technology has made it so that it’s become very easy to be able to save a person’s life.  The new procedure is almost painless and all it takes is a few hours out of your life.  The marrow you donate is replenished in your system within a matter of weeks.  And most important of all is that you have a choice until the very end, but if you do decide to register make an informed and educated decision.

How can people join the registry if they haven’t yet?

Kristeen: Registering is easy and all you need is four cotton swabs with saliva samples and a completed form. You can get a kit mailed home to you or register in person at a drive near you!

Thanks to Darshana and Kristeen for taking the time to answer these questions. I hope that you have gained a little insight into what it means to be a bone marrow donor. If you still need some more information, be sure to check out SAMAR and A3M or this handy FAQ. And of course, to help out Amit Gupta, please visit his site here.

Two weeks ago I got a call from my doctor, who I’d gone to see the day before because I’d been feeling worn out and was losing weight, and wasn’t sure why. He was brief: “Amit, you’ve got Acute Leukemia. You need to enter treatment right away.”

I was terrified. I packed a backpack full of clothes, went to the hospital as he’d instructed, and had transfusions through the night to allow me to take a flight home at 7am the next day. I Googled acute leukemia as I lay in my hospital bed, learning that if it hadn’t been caught, I’d have died within weeks.

I have a couple more months of chemo to go, then the next step is a bone marrow transplant…. [M]inorities are severely underrepresented in the bone marrow pool, and I need help. [amitgupta]

We’ve told you before of numerous cases where bone marrow donors are needed -  for Sonia Rai, Maya Chamberlin, Vinay & Sameer, Bevin Varughese, and more. For the most part, these stories have ended tragically. The sad thing is, they did not have to end the way they did. The health disparity is stark: There are 9.5 million people in the bone marrow registry; only 1% of them are of South Asian descent; that means South Asians have a 1 in 20,000 chance of finding a match.

What are you waiting for? A simple (FREE) cheek swab can save a life. I’ve been in the registry since 2005. It’s painless, I promise. A Q-tip rubbed on the inside of your cheek, that’s it. More painless than burning your tongue on hot chai. Get your kit sent to you in the mail today. Or if in NYC, go to the awesome Brown Bones party on Oct 14th at New Work City hosted by Amit’s friends.

Need more of an incentive? If you are the first certified match, Amit’s friend Seth Godin will give you $10,000. Seriously.

To follow Amit’s journey, check out his tweets at @superamit, Tumblr with him and of course the obligatory FuckYeahAmitGupta.

Remember – it’s not just Amit that will benefit. There are many other Desis such as Anand Patel who are also looking for bone marrow donors. You could save a life.

Family members would marvel (and sometimes take offense) that I wasn’t finishing up my meal with yogurt, mixing it up with rice or using it to temper the spicy foods or pickles. Imagine a grandma’s Ayurvedic admonitions in place of a Robert Mitchum voiceover and a symphony of joyful slurping instead of Copland’s “Hoe-down” and you’ll have an idea of what the Yogurt, It’s What You Eat After Dinner experience was like. Some of the reasons why I was supposed to eat it:

1. It tastes good. They felt sorry for me that I was missing out on so much tart-y goodness.
2. It had calcium and protein, both of which I needed to grow up strong and healthy.
3. Something to do with eating compatible “hot” and “cold” foods. I know it has less to do with food temps than other characteristics, but don’t know enough.

Perhaps you can think of more reasons to add to the pro-yogurt chorus. A recent Wall Street Journal article suggests another possibility—that maybe probiotic bacteria, the microorganisms typically found in yogurt and dairy products and known to have benefits in the gut, also have positive effects on the brain, reducing psychological distress and increasing confidence. Tests with mice found that mice given Lactobacillus rhamnosus behaved more confidently and with less anxiety and had a more positive mood than those not given the bacteria. Read the article at the Journal and the Economist for more information about this research.

I can’t say that I like yogurt as much as one company seems to think women would (nor can I figure out what “zen wrapped in karma” might mean), but nowadays I do like yogurt very much, in pretty much all of its forms—plain, homemade, Greek, frozen, non-fat, 2%, full-fat, etc. Not sure how or when this change in attitude happened, but surely it must have involved a taste of perugu vada.

Possibly interesting: Why Indians and Europeans Tolerate Milk  

Image: Flickr photo from http://www.flickr.com/photos/johnnystiletto/

Recently the President released his long-form birth certificate to show everyone, perhaps especially those birthers gone berserk, that he’s an American born in America who belongs in the White House. On a day-to-day basis, desis in the U.S. are not being asked to pull out their long-forms (not yet anyway), but are there other ways in which we’re made to feel that we have to prove we belong, that we’re American? New research from psychologists seems to address this question with a particular focus on the food choices of immigrant groups–”Fitting In but Getting Fat: Identity Threat and Dietary Choices among U.S. Immigrant Groups.”

Psychologists show that it’s not simply the abundance of high-calorie American junk food that causes weight gain. Instead, members of U.S. immigrant groups choose typical American dishes as a way to show that they belong and to prove their American-ness.

“People who feel like they need to prove they belong in a culture will change their habits in an attempt to fit in,” said Sapna Cheryan, corresponding author and an assistant professor of psychology at the University of Washington. “If immigrants and their children choose unhealthy American foods over healthier traditional foods across their lives, this process of fitting in could lead to poorer health,” she said.

The results are published in the June issue of Psychological Science.

Public health studies show that diets of immigrants, including those from Asia, Africa and Central and South America worsen the longer they stay in the United States. (press release)

Surveying Asian-American and white college students to learn more about their embarrassing food memories, the researchers found 68% of Asian-American respondents recalled food-related insecurities around white peers while growing up, compared to only 27% of white respondents. Examples included awkwardness about using chopsticks, eating animal parts like fish eyes, chicken feet, etc.

The research aimed to measure whether the threat of not being identified as American had an effect on food preferences by asking the students “Do you speak English?” before starting the experiment. 

Because the sampled American dishes tended to be fattier, threatened participants ended up consuming an extra 182 calories, 12 grams of fat and seven grams of saturated fat – roughly equivalent to a four-piece order of McDonald’s chicken nuggets – than participants who were not asked if they were American.

I wonder which of my food preferences developed while I was growing up might be related to trying to fit in or “be American.” My mom remembers me being introduced to American-style food when I was in preschool and says that I asked at home for foods like “fruit cop-tail” after eating them there. I remember bugging our parents at the grocery store for things like Kraft’s mac & cheese in a box, which is its own kind of embarrassing food memory now that I know more about how it stacks up nutritionally against their homecooked desi meals. 

Here’s the paper if you are interested in examining the research in more detail. If you are interested in how cultural stereotypes affect people’s actions and choices, then you may want to follow the work of Sapna Cheryan, which also includes research on why women are underrepresented in computer science and how that might be changed:

(Image via Flickr: calculat0r)

Update: Sale is operative. Limit 5 per person!

Just thought I’d pass on word, tomorrow the 23andMe genotyping service is going to have a sale. The details:

When: April 11th, 12 AM PDT to 12 PM PDT (so 3 AM EDT to 3 PM EDT)

How much: $9/month for 12 months = $108 per year for their analytic service. The kit cost, $199, is waived for the sale.

What you get: Ancestry analysis, trait assessment, and disease risk estimates. I wouldn’t put too much stock in the last in terms of bang-for-buck if you are not adopted…though the last person I explained that to ended up finding over 50% probability of macular degeneration (not a 50% increased risk, a 50% probability of developing the disease!).

For nerds the big deal is that you can get your raw genotype for 1 million markers. There are several personal genetics projects which have been started by people pooling their data. I put up a simple tutorial for those curious, and have started my own African ancestry project. But for readers of this weblog, Harappa is the way to go. Zack has over 80 participants now. Below the fold I’ve placed a tree which shows the genetic relationships in terms of ancestral quanta. I’ve underlined myself (I’m right next to my parents, as you’d expect).

Kirti said she was shocked when she learned Donohue lost her job.

“Amy is donating a kidney to my mom and she lost her job because of spending time testing for it. It’s really hard to understand how that could happen, and it’s hard not to feel guilty or upset,” said Kirti Dwivedi.

Amy estimated she used about seven sick and personal days in the past couple of months to go through testing. She had held her job for approximately seven months.

“I take full responsibility. How can I not say I’ve been distracted? I’ve got a big thing going on in my life,” said Donohue.

She said while she does not want her job back, she wishes her company had handled her situation differently, considering the circumstances.

“Sometimes, accommodations need to be made for people when something huge is going on,” said Donohue

Amy has written up her own version of her firing over on her personal blog. Personally, I would have thought an employer would appreciate the value of a person with Amy’s courage and empathy and try to accommodate such heroics. But for some people, it’s all about the bottom line.

If you’re interested in learning more about Project #TinyFabKidney and sending your support to Amy, Kirti and Tiny Mom, you can find them on Facebook. And you can donate here.

Team Sonia – Sonia’s brother Sumit Rai, family and friends are organizing drives today and in the next few weeks. Please take the time to help spread the word about the drives and join the NMDP registry if you have not already done so. You can visit www.curesonia.org, or visit their Facebook page.

As you may be aware from our previous posts on the topic, the National Bone Marrow Registry (NMDP) is in dire need of more ethnic donors. South Asians, as well as any minority, and especially people of mixed ethnicity are needed. Sonia is currently receiving excellent care at Massachusetts General Hospital in Boston, but in order to survive beyond the next few months, she requires a bone marrow transplant. Most matches occur within ethniticty and increasing the number of South Asians registered as potential bone marrow donors will help Sonia as well as many others who are searching.

Among the 7 million registered donors currently, approximately, only 2% are South Asians. Ethnic Minorities have a 30-40% chance of finding a match from the existing NMDP registry. Caucasians have an 80% chance of finding a match from the existing NMDP registry [link]. The saddest truth of this process for a patient is that finding a match is not sufficient. I attended a talk by a Samar representative who mentioned a South Asian patient. After a lengthy search, he found a match and moved to the Seattle area. Unfortunately just before the donation process, the donor backed out. Another patient had 4 matches that did not work out.

Approximately 50% of all Ethnic Minority donors will NOT push through with donating if called as a possible match for a patient. (whether because they are unreachable, they say “no”, or become medically ineligible). Whereas over 70% of Caucasian donors WILL proceed with donating if called as a possible match [link].

What can you do?

LEARN

Learn about AML and what committment it takes to be a donor. The process has gotten a lot simpler over the years. It does not take a blood test or a needle, only a simple, non-invasive cheek cell sample to become registered. If you are contacted as potential match, learn about what is involved. Learn about some of the facts and myths.

JOIN

What Sonia and others like her need are committed and available donors. This holiday season, spend a small amount of your time and be the miracle someone is praying for. Find a drive organized by Team Sonia. For the most current information, visit their Facebook page. Here are some upcoming events I found starting today. Team Sonia plans to organize more events on the East Coast as well:

Bone Marrow Donor Registration Drive: Nachi’s Birthday. Where : 25 Lusk Street, San Francisco, CA. When : Today from 18:00 to 21:00

Bone Marrow Donor Registration Drive: Darbar-E-Khalsa. Where : Pomona Fairplex, 1101 W. McKinley Ave, Pomona, CA. When : Saturday 25 December from 11:00 to 17:00.
Bone Marrow Donor Registration Drive: Fremont Gurdwara. Where : Fremont Gurdwara, 196 Gurdwara Road, Fremont, CA. When : Sunday 26 December from 10:00 to 14:00.
Bone Marrow Donor Registration Drive: El Sobrante Gurdwara. Where : El Sobrante Gurdwara, 3550 Hill Crest Road, El Sobrante, CA. When : Sunday 26 December from 10:30 to 14:00.
Bone Marrow Donor Registration Drive: Livermore Temple Where : Shiva-Visnu Temple, 1232 Arrowhead Ave, Livermore, CA When : Sunday 26 December from 11:00 to 15:00
Bone Marrow Donor Registration Drive: Sunnyvale Temple Where : Sunnyvale Temple, 420-450 Persian Drive, Sunnyvale, CA When : Saturday 1 January 2011 from 11:00 to 17:00
Bone Marrow Donor Registration Drive: Los Angeles New Years Drive Where : Valley Hindu Temple, 18700 Roscoe Blvd, Northridge, CA When : Saturday 1 January 2011 from 11:00 to 17:00

or learn about how to join and become registered.

STAY IN TOUCH

I gave my email address when I joined, and now I get a monthly newsletter which also contains my Donor Center and Record information and a convenient link to update my contact information. If you have already registered, stay committed to this cause. Remember to update your contact information.

SPREAD THE WORD

Even if you are already registered, you can still do more. Email, blog, tweet about it and spread awareness using your favorite networking media.