The concept of donating bone marrow terrifies me. I imagine a doctor drilling into my skeleton and using a large needle to suck out the gooey stuff that makes my blood. It sounds absolutely horrific.
If I were ever to consider doing this, someone would have to educate me to the point where my perceived safety is high. Right now I know that this probably won't kill me, but I don't understand it enough to trust it. I imagine that I am not the only person in this situation.
I also felt terrible writing this. My fear is absolutely petty compared to the fear of being struck down by leukemia. Perhaps that's why I felt obligated to share.
First, the name of the procedure itself is misleading. It's called a "Bone Marrow Transplant". A lot of times however, there is not even bone marrow taken directly from a donor. I was not even poked in the bone at all. In my case, I was hooked up to an apheresis machine for a few hours, and it basically pumped blood out of one arm, and then pumped back the blood minus stem cells into the other arm. A bag of stem cells is then intravenously given to the patient which then makes its way to the bone cavities and starts growing new bone marrow. The donor goes back home on the same day and hangs out like its any other day.
Second, there are some blood disorders for which they require bone marrow from the donor. Now, again, this is not scary as it sounds. They extracted bone marrow a few times from my brother for tests. There is no "drilling" involved. Yes, its a bigger needle, that they insert into your hip bone after administering local anesthetic. I don't know first hand how much it hurts, but they don't even admit you in the hospital for a day. And for the next couple of days, you are a bit sore from it. My brother has average pain tolerance and I didn't see him writhe in pain at all at any time once the procedure was done (happened in less than 10 minutes). I suspect that a torn ACL, a broken ankle or arm which many people on this list would have experienced are far far much worse.
Third, unlike other types of donations involved in transplant like a kidney or liver, this process doesn't take anything from the donor that is not completely replaceable. If you donate stem cells, they will replenish in your body automatically, and the same with bone marrow. Really, there is no easier way where it costs you almost nothing but average pain and minor discomfort for a few days at the most.
I spent over three months in the hospital with my brother in India when he had the transplant. Fortunately, I was a matching sibling so we didn't have to look in any registry. But I spent my days and evenings with countless families who had a loved one undergoing chemo, while just waiting hopelessly to see if they could find a matching donor in a registry. Few things are as heartbreaking to see as families just not being able to do anything and watch someone in their family just hinge on hope from a database. The least we can do is increase their chances for hope with a cheek swab.
The donation process was exactly as described in
but I was given only local anesthesia. The marrow was withdrawn from one of the two protrusions of my pelvis about 2-3 inches away from my spine (basically the very top of my butt). The process is certainly a strange feeling, but it's tame--not donating a kidney or anything.
It's a good opportunity to practice deep breathing and relaxation while focusing on the wonders of the human body.
The page you link to clearly says: "Donors never pay for donating, and are never paid to donate."
Is your story missing something?
Yes, I should have noted that I was donating as a paid research subject and not specifically to a marrow bank or to an individual who needed a transplant.
I commented to explain that the marrow-withdrawal process itself is nothing to be concerned about, actually involving less discomfort than donating blood.
Being afraid of something like this is absolutely rational. Losing something that helps to keep you alive is scary, even when you're told that there's absolutely no risk to your personal health in doing so. But don't let fear hold you back. That sounds super high and mighty, but I understand your fear more than most.
I am terrified of giving blood. Terrified. The thought of having my blood drained out gives me goosebumps. Writing about it is giving me goosebumps. That being said, I donate blood platelets every month or two. The process takes 2 f'n hours, and God forbid I look at the blood leaving my system (because I will pass out). The trick for me is not looking.
Keep in mind that donating anything is a good thing, and they will never take anything that will hurt your body's ability to recover. Try it out. If you can stand it, at least you overcame your fear and tried it. If you can stand it, or think you can, find a trick to make it more manageable.
And last bit, I too have never donated marrow before. If you're willing to try, I will try it as well. Any other first timers are welcome to jump on the bandwagon with me. Thanks for sharing Oconnore.
That being said, I just signed up. I had started reading the book "The Emperor of All Maladies" and then seeing Amit's post pushed me over the edge to go ahead and sign up.
Even in my ignorance I figure someone's life stands in the balance and my pain and time is more than worth it to potentially save a life. That being said if my # gets called I'm sure I'll be nervous as hell!
I'm an Acute Mylogenous Leukemia (AML) survivor and a Level 2 ambassador with the National Marrow Donor Program. I'd like to thank you for your honesty, as a lack of awareness (and the resulting fear) is one of the biggest obstacles the NMDP faces when trying to recruit donors. Your perspective really is something that I think a lot of people feel but don't necessarily share, and I commend you for having the courage to do so. It's a step in the right direction for finding the right means of educating the public.
I'll try to respond to some of your questions as best I can, but please keep in mind that I am not a doctor and while I have received volunteer training from the NMDP, any thoughts expressed in this post are my own.
Your bone marrow is the mechanism in your body that generates blood cells. Blood is composed of a few different parts -- red blood cells, white blood cells, platelets and plasma. Red blood cells carry oxygen throughout the body, plasma is the liquid, platelets help in clotting to prevent bleeding and white blood cells act as the carriers of the body's immune system.
What happened with me (and likely with Amit) is that at some point a mutation occurred within my bone marrow so it began generating malformed white blood cells. Instead of behaving like a normal immune system these mutated cells did nothing but fill up my blood stream, inhibiting the growth and transport of normal white blood cells and platelets. As a result I began to get progressively sicker, with bruising appearing over my body. As you can imagine this situation gets very dangerous very quickly, as doctors told me that if I hadn't gone into the ER when I did I ran the risk of bleeding in my brain while walking to class.
Chemotherapy was used to effectively kill off all aspects of my blood -- white blood cells, red blood cells, platelets included. The hope here was for chemo to wipe out as much as it could in hopes of eliminating all traces of cancer in my bone marrow. Due to the human body's natural resiliency, after chemo eventually the bone marrow would start to regenerate. The hope was that after this regeneration happened no cancer cells would be reproduced.
For me, it was a waiting game: undergo chemo, wait to see if cancer reappeared. I did this six times (2 inductive rounds, 4 consolidation rounds). Thankfully after those first two rounds I was in the clear. I've been in remission for a little over four years now, and I still go into the doctor for regular blood tests.
While I'm not exactly sure of the medical reasons why bone marrow transplants are needed, I do know that a very simplistic view of them is that they're necessary when chemotherapy is not enough. Whether it's because the chemotherapy is ineffective or specific DNA markers or whatever, there are times when the body's natural bone marrow is no longer effective in producing normal blood cells. It's a dangerous procedure for the recipient (because of the possibility of the body rejecting the transplant) but it's not considered in circumstances where other viable alternatives exist. It really is something of a last resort.
For donors, joining the registry is painless and extremely simple. The NMDP asks you to check against a preliminary health screening (http://www.marrow.org/Join/Medical_Guidelines/Medical_Guidel...), understand the commitment (http://marrow.org/Join/Your_Commitment.aspx), and fill out a form with some medical/contact information to make sure that you can be contacted in the event of a match. I read a statistic that less than 50% of those currently within the registry (1) can be contacted successfully and (2) are willing to donate once a match is found. (http://www.ij.org/about/2903) The form asks for your contact information and the contact information of two others who do not live with you, just in case you happen to move elsewhere at a later date. The NMDP takes privacy very seriously, and will not solicit you or others with the contact information you provide.
The form comes with a swab kit consisting of four cotton swabs. These swabs are processed by the NMDP to match donors and recipients by specific DNA markers. To register, you simply swab the inside of your cheek with each swab, for 20 seconds each. Put the swabs back into the kit and then they're sent off for processing. That's it; a form and four cheek swabs.
A donor's commitment when joining the registry is to be on the registry until they're 61, although they can remove themselves from the registry at any time.
Given the specific DNA markers used to match donors and recipients, realistically the chances are that you will never be called to donate marrow. According to the FAQ here (http://amitguptaneedsyou.tumblr.com/faq), the NMDP puts the odds at 1 in 540.
If you do one day receive a call to be a donor, there are currently two main methods of bone marrow donation. The first, Peripheral Blood Stem Cell (PBSC) donation, is used in over 70% of cases and is described in detail here: http://www.marrow.org/Registry_Members/Donation/Steps_of_Don.... Another good reference is this site: http://helpingtami.org/asian_bone_marrow_and_pbsc.html, which despite the cartoonish graphics, serves as a pretty accurate representation of what PBSC entails. You get a shot for a few days that kicks up your normal bodily process of bone marrow production into overdrive, to the point where bone marrow cells enter your bloodstream. You donate blood, after which bone marrow cells are irradiated out. The blood is then put back into your body. I've personally received the shot (called Neupogen) that is used to kick up your bone marrow production over 30 times, as it was used following each of my rounds of chemo. A common side effect of the drug is that it makes you a bit achy and sore, as if you had gone on a long hike the day before. I did not feel any significant discomfort on neupogen to the point where I couldn't go about my day as normal.
The other procedure is extracting bone marrow from your hip bone, which is performed under general anaesthetic. It is also depicted on the helpingtami.org link above. 30% of bone marrow donations are performed this way, and I believe it's usually due to restrictions of the recipient. Receiving a bone marrow transplant can be extremely taxing on the human body, and if a patient is too young or old for PBSC a bone marrow extraction is requested in its place. Admittedly this process is more invasive, and as a result donors are put to sleep. Doctors use special, hollow needles to extract little bits of bone marrow from your hip, and because the needles are small it does require a lot of sticks to collect enough marrow for a transplant. I've also had this procedure done to me, albeit in a lesser volume -- it's the same process used to perform bone marrow biopsies. I was awake for the procedure both times and received local (vs. general) anaesthetic. Needles are needles so there was discomfort, but it was very quick -- like a hard pinch. Patients are sore for a few days afterwards, more so than PBSC, but recover quickly. Donors perform a full health scan before donating in the interests of their own well being as well as the patient, so if you're not healthy enough to donate and recover, you will probably not be allowed to get to that point in the first place.
When donors join the registry they commit to donating to anyone in need, not just the person the drive is in honor of. So although a local drive may be in honor of Amit, the power of the awareness being raised by the publicity of his sickness is that there are people who have never heard of Amit Gupta that will have their lives saved by his efforts, perhaps even decades from now. I know that Amit is a very important person in the technical community, but please remember that everyone who needs a donor is the most important person in the world to somebody -- a parent, a sibling, a child or a best friend. In that regard I believe that everyone who has someone in their life that they love more than themselves can empathize with what it must be like to be powerless to help that person in their time of greatest need.
Please consider joining the bone marrow registry. It truly is the opportunity to save someone's life.
And here is another:
The second one is the more likely one to be used, the other is quite rare. In this case it seems it is 'only' the second (which is still quite bit more time consuming than a normal blood donation in duration).
For a first hand account: I've donated bone marrow by peripheral blood stem cell extraction, and it's mostly painless. I'd do it again any day (except I'm not allowed to by my country's organization's policy, but that's another problem). A colleague of mine donated by needle extraction, and didn't report anything traumatic.
It is a rather big needle that goes into you, but you're under anesthetics, so it'd not that big of a deal. Risks are minimal, and include unwanted damages to bone, muscle and nerves, plus any regular anesthetic-related effects. Realize that with any operation, these things are unavoidable and it is not unique to bone marrow donations.
Generally (quoted from Dal med school), there is about a 1% chance of adverse effects in the donor, and the 1% is almost entirely anesthetic related.
You will be sore for about two weeks. The amount taken, however, is very small, and it shouldn't really affect you all that much. All in all, it's worth saving his life--any life in general, really.
And I am a college educated person. If I got through school with this level of ignorance about the bone marrow donation process, there are probably millions of other people with similar ignorance about the issue (and likely, those people are not as quick to do research, as I am doing now). I don't think a few sentences in a FAQ is enough to combat this.
But I wouldn't be too worried about giving up any of your cells, besides brain/nerve cells.
Almost all our cells have the same genetic information (Red Blood Cells are one exception), so it is theoretically possible to turn one type into just about any other. Shinya Yamanaka's team made a huge step in that direction experimentally about 5 years ago: http://en.wikipedia.org/wiki/Induced_Pluripotent_Stem_Cell
I'm not saying that this is a viable option if you run out of PBSCs (just as it is clearly not yet an option for you to donate skin cells to help Amit), so one thing you may want to find out is if your PBSCs are limited in supply--I don't know (and I am also not in the right demographic for this donation).
Here's some more information: http://www.beatson.scot.nhs.uk/content/default.asp?page=s22_...
And it makes sense. Amit is a "come one, come all" kind of guy, which is why so many people are rallying behind him.
I'm pretty sure random people could drop in at Spiral Muse. I mean, when I was there, they did a time or two. It just wasn't as well publicized.
I'm fucking done here for a while. You people fucking suck.
Hopefully this raises awareness enough that more people become aware of what this is all about and we can save more lives.
Imagine this - if this was Steve Jobs asking for help, what do you think the response would have been? Versus, someone like me who is vanilla software engineer.
Trying to give an extreme example to illustrate this.
Lots of us have gotten friends and friends of friends to swab and shouted from the rooftops to try and get people to contribute to the pool. Many are also creating drives for people to register. There isn't a lack of action - but there can always be more and we will continue to push.
Long time reader but never posted before. If anyone here will be attending, I'll be manning the National Marrow Donor Program booth registering donors this Saturday, October 29 at TEDxMidAtlantic in Washington DC (http://tedxmidatlantic.com/). While the booth is intended to be in Amit's honor, I strongly encourage any minorities to join the registry, as the need is severe across all ethnic groups. I'm an AML survivor myself (though no BMT, chemo-only), and I can't emphasize enough that the decision to join the registry is opening yourself up to the opportunity to literally save someone else's life.
The vast majority of championing for this cause is happening on behalf of Amit, not by Amit himself. He was actually quite reluctant to be public about his condition, and has only stepped forward at the encouragement of people close to him.
While Amit is at the center of this effort, the narrative has quickly widened to address the much larger issue of underrepresented populations in the bone marrow database. The impact of the efforts inspired by Amit's situation will be felt far beyond that of one person.
Even as he fights for his life undergoing intense chemotherapy and all kinds of difficulties most of us have no appreciation for, he continues to do the best he can to help people.
Anyone who does that deserves not just our respect and admiration, but our attention and participation.
If anyone feels like being self righteous, they might do well to channel that energy into doing something that helps the world instead of leaving insidious comments on a thread.
I just went ahead and did the swabbing. It was very simple, took only 2 minutes, and was completely non-invasive. (It was also completely free.)
If you haven't signed up yet, please do so. Even if you don't care about Amit (I have no idea who he is), you might be able to help someone else in need.
My primary concern is that of privacy. I don't really trust that a record of my DNA/swab test won't end up somewhere it's not supposed to be.
You worry too much. :) No one wants your DNA - and if they wanted it they could easily get it. Take the test and possibly save a life.
Edited: to add a smiley face and improve the tone, since this was intended to be a "don't worry be happy" message and not "you're a bad human being". Sorry about that.
Now it's turned out to have arisen from good intentions, so all is well.
why are getting worked up about nothing? that too when the comment was not meant for you?
He eventually absent-mindedly spits on the sidewalk and they dab it up with cotton swabs, run the tests, and get the match, and arrest him. My point is, if somebody wants your DNA, even if you spend your entire day methodically covering your tracks because you're a murderer and you know it will send you to jail for life, you will eventually leave a trace somewhere. It's just the nature of our biology - it isn't the case that your DNA is a secret, and your body is a vault, and submitting this test is giving away that secret.
In the case of submitting it here, I cannot imagine that any government agency that has the need for your DNA for some particular reason would think this was the best way to get it.
(Hope this didn't serve to just make you more paranoid...)
From what I understand about this treatment, blood is removed from the patient and 'infected' with a harmless HIV virus that has been modified to attach a molecule to T cells. This molecule binds to a receptor (CD19) on the cancer cell, thereby creating T cells that attack the cancer cells. The treated blood is injected back to the patient and the patients body creates more of these cells on it's own- effectively creating an immune response to the cancer cells.
Do you think a subset of HN readers could somehow facilitate a project that could help the labs researching ( or planning on researching ) methods for expanding this method of treating cancer? I would like to ( and inspire people here to ):
1) find the available labs that can best perform the _steps_ required for this treatment _process_. Basically, get a list of labs.
2) help expedite iterative methods for techniques that:
a) speed the development time of the specific _step(s)_, and/or
b) broaden the efficacy of the overall treatment _process_ ( ie. treat other cancers ).
Basically, list the _steps_ in the _process_ and see if there is a way to make them faster, better.
3) create tools that allow the people and labs working on this _process_ to communicate as efficiently as possible. Basically, learn how the different labs work and write tools that streamline their collaborative workflow.
I have a feeling there are many smart people on this site with free time ( ie. visiting this site often ), technical resources, and organizing skills that could make this happen- fast. Shoot me an email with questions/comments/complaints if you don't want to comment on this thread; I want to help.
- There is, naturally, demand for bone marrow transplants in India. What are the moral and ethical implications of denying someone there (of presumably lower economic ability) a transplant so they can supply someone in the US (of presumably much higher economic ability)? If they were swimming in an excess of willing donors, perhaps this would be less of an issue, but I don't know any country in the world where there is a surplus of bone marrow donors.
- What incentive structure does this create, and what does it mean for us if we legitimize commercial organ trade? How many donations will be voluntary, or will we see an explosion in "donations", forced upon the disenfranchised and vulnerable?
I'd be very wary of walking down the path of commercialized organ trade.
From what I understand, the procedures for donation have gotten simpler and less invasive all the time. Giving up a day for the chance to save someone's life is an absolute no-brainer. Easiest decision I'll ever make.
Go get on the list.
Already there are a lot of people who go to third world countries to buy organs. If it was legal to buy organs people wouldn't have to risk the unsanitary operation condition.
Furthermore, seeing as giving blood or marrow is less dangerous there should be no reason not to allow people to buy them.
Amit probably has a better chance of finding a matching donor there and the procedure, I'm assuming, is less expensive than over here.
honestly, i think it's a good time to think of all the positive things we can do with what we have - including using our technical knowhow to make the world a better place for those less fortunate.
2. done without shame; without decency or modesty
1. having or showing a moderate or humble estimate of one's merits, importance, etc.;
I think you're vastly underestimating the number of people in the startup community to who he's very important. He's not Steve Jobs, but he's someone a lot of us care about.
Second, I have not read the rules for donating/being on the reigstry so I may be jumping the gun and having a preconceived notion that doesn't hold true.
But there's assumption of the number of people who would help someone else if they were found a match as opposed to simply helping out Amit. If they are on the registry and do match someone else are they required to do the donation at that point? Unlike blood donation, the bone marrow is a just in time donation (if I understand it correctly). This puts it in a different category.
Again, I think this is a good idea and I hope those that are putting their names on the registry are doing so for the belief of doing good for all, not just for one.
In any case, take a look at the marrow match site that Amit links; it requires people who send in swabs to commit to donating to any patient that matches, not just Amit. This is probably going to help a lot of people besides just him.
I did not say that you are cynical. I just said you are shameless.
At what point do you admit to yourself you love your life and want to continue to live?
At that point, that's when shamelessness and modesty are thrown on the window and you do what you can to try to survive.
I don't know you and you more than likely don't know me. But still I feel that I have to respond to you because the way you carry yourself here is in my opinion doing a disservice to yourself, to the community and to your employer.
If you take up a position that is going to be this un-popular you should at least try to do a better job of explaining your reasons why than you have done in this thread.
In principle, you have a point. Before Amit Gupta knew that he had leukemia, he in all likelihood would not have been nearly as motivated to improve the state of the art.
But such is human nature. Strangers are statistics, people are tragedies. We can only relate to that which we ourselves have direct knowledge of, and the second best thing next to that is that someone that we know or care for has direct knowledge of.
That is what makes things personal. And I think that is where you're missing the beat here. Amit Gupta is personal for a large enough number of people here (who likely aren't even in the right demographic to help him) that you are wrong about this being 'shameless'. It would be shameless if none of us had ever heard about Amit Gupta in the first place.
And even though plenty of people here (likely including you, but I can't be sure of that) have never heard of him, lots of people have.
We also have a lot in common with Amit Gupta. We're all either working in the IT business, working on start-ups and we're likely all at risk of being blindsided by a disease like this. Which is typically not on your radar when you're a 20 or 30 something working hard on your startups.
So, just like it isn't proper to talk bad about people on their funeral it isn't proper to piss on those that have landed a very bad lottery ticket indeed and that are currently - with the help of some dedicated friends - trying to change the odds in their favor.
Whether it will work or not is unknowable for now, and even if it does work it will likely be a thing with a very significant impact on the lives of Amit and those near him.
If Amit should die you may come to regret your harsh words here quite a bit.
In the meantime I hope that a match will come up and that Amit will be allright and that this will raise the awareness of how fragile life is, even when it seems as though you're doing just fine.
If one day there will be a website titled andrewmoffatneedsyou.com then I will not hold any of this against you.
This alludes to my original comment. I hope he continues promoting this kind of thing if it helps him, but for other people, given that he has such a broad reach and lack of modesty. Is that so wrong to say? I know it is unpopular to say, but is it wrong to hope for?
I have no problem with what is being done, just how it is being done. I don't wish Amit dies. I don't even know him. It is a tragedy that he has leukemia. But given the platform and reach he so clearly has, is he grateful and humbled for his ability to seek help on such a massive scale, that many dying people will never have? Doesn't sound like it.
He wants life, but it doesn't sound like he has much respect for it. It sounds like he wants to live, but sounds like he only tangentially gives a damn about the cause which will save him (bone marrow transplants). It's very "me me me."
As for my community and my employer, don't bring them into it. I'm my own person, with my own opinions, and those are whose opinions I express.
When you've received something that is effectively a slightly delayed death sentence 'modesty' goes right out the window. You need help. Trust me, having to ask for help is not the greatest thing to do but sometimes there is no way around it. As I'm sure Amit has found out in the hardest way possible. Having to go cap-in-hand to the world at large to ask them to do something potentially invasive on your behalf is a fairly humbling experience.
> Is that so wrong to say?
Yes, I believe it is. I doubt Amit had half or even 10% of the reach that he had a year ago than he has right now because those that know him and like him are the megaphone through which is case is broadcast to the world. Before he was this gravelly ill his ability to reach people was only a small fraction of what it is today. The posted link is testimony to that.
I don't see Amit himself doing any of this on his own, it's more that enough people know him and care about him that causes this to happen. That alone should give you some pause, how many people do you know that would get that kind of response? If the answer is 'none' then you can probably attribute that to some positive factors working to Amit's advantage, such as being a relatively decent human being.
> I know it is unpopular to say, but is it wrong to hope for?
No, it is not wrong to hope for that. But that could be brought in a way that does not drag Amit or those that try to help him down. You are making your point in a uniquely negative way.
> I have no problem with what is being done, just how it is being done.
Why? How it is being done is simple: in the most effective way possible, given the short amount of time available and the difficulty of finding a match in that particular demographic the only chance there is for Amit is for some as yet unknown person to be a match. Without that, it's game over. If you have a better way of achieving that goal then I'm all ears.
> I don't wish Amit dies. I don't even know him.
Well, then before you made your original statement you should have probably invested some time in that. I don't know him either but I do know about him and what I know about him makes me think that he's a nice enough person that if I had a small chance of a match that I'd happily get myself tested.
> It is a tragedy that he has leukemia.
> But given the platform and reach he so clearly has,
> is he grateful and humbled for his ability to seek help on such a massive scale, that many dying people will never have?
I don't know. Have you asked him?
> Doesn't sound like it.
You are extrapolating a lot from very little. The only person that can shed light on that is Amit himself and I think that currently he has other worries. But after this is all over and he hopefully survives this ordeal you'll be in an excellent position to ask.
> He wants life, but it doesn't sound like he has much respect for it.
Again, what do you use to come to that conclusion?
Has he done anything at all that warrants that conclusion?
> It sounds like he wants to live, but sounds like he only tangentially gives a damn about the cause which will save him (bone marrow transplants). It's very "me me me."
That's the nature of disease. It hits you, you personally or someone that you know or care about. Until then it is abstract. So the only times that you will hear about a disease where it will actually hit home is when it affects someone that is not just a fragment of a barchart. For every Amit Gupta there are 1,000's of people that haven't got a chance and of course it would be great if we knew about them and if we could do something about them. The fact is that without Amit's plight I would not even realize that his demographic is underrepresented in the banks.
My own major issue with blood donations and so on is that this is big business, the donated blood products are sold at enormous profits by companies specializing in harping on your conscience and getting you to give them their raw materials at no cost, then process them (which does cost some money), turn around and make a killing.
One of my ex girlfriends worked in blood processing for a facility that will remain nameless but you can rest assured that they were not worried what they were going to pay their heating bill from.
There are lots of things wrong in this world that you could get a head of steam up about but by going after Amit Gupta personally you are making a huge mistake.
It's not his fault he landed this particular disease and you can't blame him for doing what he can (and I have yet to see Amit doing something, all this is done by others, presumably with his consent) to survive this.
What comes after will take care of itself once it is known that there is an after.
> As for my community and my employer, don't bring them into it.
You brought them into it. When you speak in a public forum with your own name and a bunch of links in your profile you have to realize that you are doing nominally on your own account but that there are lots of people that will be offended and that that will radiate to those that you associate with.
You may not like that but that is human nature too.
> I'm my own person, with my own opinions, and those are whose opinions I express.
Well, if I were your employer I'd ask you to please remove that link to my company as long as you decide to make a fool out of yourself in public.
I can't see anything positive coming out of it.
Anyway, I think I'm occupying enough lines in this thread and it does not seem like I am making much sense to you so I will leave it here.
Then I realized - it doesn't matter. The fact that someone noticeable shines a light on a cause and makes it more likely to receive some form of advances or help is laudable, if for no other reason than it increases the amount of time that we all think about these things and realize that it can affect any of us.
The only time I get frustrated about things like this is when I tell myself "yeah, but no one's helping out with my priority." But my priority is just as "selfish" - a friend of mine has a disease that gets almost no press. Still, why not cheer for those who spend any amount of time helping others? As soon as they cure / find treatments for these diseases, they'll have time to get to my friend's.
So... I understand where you're coming from. But I think spending any amount of time denigrating someone for trying to help (even if it helps him- or herself) is counterproductive.
Shameless, defined: (of a person or their conduct) Characterized by or showing a lack of shame.
Shame, defined: A painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior.
modesty: 1. having or showing a moderate or humble estimate of one's merits, importance, etc.;
Question for you: Do you think he should feel shame for what he's done? If you broke your leg alone in the woods, would you cry out for help?
You claim to have a concern about the greater good and the millions who have leukemia, but from where I stand -- and pretty much everyone else -- you're using that to cover your asinine, judgmental opinion of what Amit's doing.
If that was your true concern, there are a thousand ways to express it without injecting your judgment. If you cared about not being judgmental and effectively communicating your concern, you could easily have chosen one of those. Instead, you appear more concerned about calling out Amit for a trivial fault -- the guy is using the resources at his disposal to save his own life!
So yes, he is championing other peoples' life-threatening needs!
The guy wants to live. So stop this rather pathetic passive aggression.
I suspect you're not really sorry that we die, as you seem to think that when faced with death, the proper response is to accept one's fate.
I would understand your attitude if setting up a website meant that kittens had to die, or someone else had to suffer, but seeing as this isn't a zero-sum game, I don't.
How do you know that Amit isn't feeling ashamed of needing to publicise this? How do you know it's not his friends that have almost 'forced' him to do this?
I honestly don't get why you felt you needed to unzip your flies and piss all over this. Has this triggered some personal memory?
I think the proper response is to realize that millions of people are also faced with death, that everyone WILL be faced with death, and to temper your actions with modesty and humility.
> Has this triggered some personal memory?
How did you know...sobs.
And it is shameless. Why do I care about amit gupta, and why are all his promotional materials centered around HIM, and not acute leukemia? People suffer every day who can't be heard like this, is it so wrong to bring up that uncomfortable fact?
To the people saying, "well what he's doing is good for others, too!" Yes, I agree. But face it, he never would've done this had he never got acute leukemia. So my original hope remains: "if this works out for him, it would be cool to see him champion other peoples' life-threatening needs." With him seeing the direct benefit of these efforts on his life, it would be cool if he maybe took it a step further and continued it for others.
Because it is more effective. It is marketing 101 that it helps to spread a message if you have a face to put on display. His story tells much more than any infochart about leukemia ever will. You can bet that people are much more inclined to help if they know who is in need.
Also, IMO, it is more honest. Even if he is "privileged" to be heard when others can't, there should be no shame in him being able to exercise this privilege to save his own life.
If we take the current criticisms (of your comment) as being morally representative of the general population (probably a decent approximation) then most people would consider the dictionary definitions of ``shameless'' and ``modest'' to be incomplete and not applicable (at least not to someone that is possibly dying). That is one reason why you see so many upset comments here.
In the end, saving Amit's life is better than not saving it, all else being equal. Especially when the goal is so clearly defined and within reach.
But he could've had the same result AND acknowledged the fact that millions of people have equally important life-threatening afflictions, that his is no more important, and that his experience has helped him realize the greater good of focusing on promoting a cause like bone marrow transplants.
Instead, he chose to come off very selfish and presumptuous of his own importance to literally everyone he can reach. Just read the promotional materials, it really is shameless.
Back to my original comment though, it would be cool if he continued exactly what he's doing, but for other people, if this works out for him.
Permit me to explain how I see this. You may disagree strongly with me but I hope to convey why your comment aroused so much passion.
I don't see Amit as considering himself to be more important than anyone else. I see a man who is trying to save his own life (with very little time to spare) and I have sympathy with his cause. I don't expect him to take this cause further when he is well, even though I know that many people in the world are suffering.
My position is very different from yours. I find it difficult to agree with the sentiment of your comment because I don't expect Amit to be looking out for anyone else but himself at this moment. In this case, I suspect that many others here have similar views.
He should do nothing to save himself until he's helped cure Cancer; TB; Malaria; HIV/AIDs; Starvation; Poor Sanitation; War; Earthquake prediction; etc etc?
>that his is no more important
I'm guessing (I don't know him) that it's more important to him and his loved ones.
Plus, word is that Amit is a really great person. I wish I was south asian, so I could help...
B) Sure, the design is a little flashy (I think it looks great, by the way), but I don't think he is being terribly immodest. He's not bragging about his accomplishments, he's just trying to get people to sign up as bone marrow donors, and he's using his personal plight as motivation.
The efforts happening on his behalf are, by and large, very consciously being done with this in mind. They are increasing awareness of underrepresented populations in the bone marrow database and making a much larger impact.
Also, these efforts are being coordinated and implemented by volunteers on Amit's behalf. Amit himself is not running this show. People who have better things to do than troll the internet are.