Hi Mehr, I registered last year after someone very close to me was diagnosed and treated - now in remission. I added myself to your list, I hope it will help.<p>Here are a few things I learned after being closely involved with someone else's treatment. You may have heard all this already, sorry if I'm stating the obvious. But it never hurts to remember!<p>First: the treatments have gotten incredibly better in just a few years. The science and engineering in this field are progressing at a rate comparable to software. I also learned that age is an important factor: the younger you are, the better your body will react to chemo and transplant. And you live in the US, which has access to the best staff and equipment in the world.<p>Second: never forget that you can play a really important and active role in your care. Don't be passive! Do research on your own, don't hesitate to make doctors repeat themselves or explain in more detail, and approach the whole thing like teamwork: your doctors and nurses are one half of the team, and you are the other half. Yes, they know what they're doing. But nobody will be more invested in this than yourself. And remember that your state of mind has a true impact on your body.<p>I hope this helps... Good luck with the search and the treatment.
Hi Mehr,<p>I'm a leukemia survivor (AML) and was diagnosed when I was 21 and in undergrad, roughly 8 years ago. I started www.cheekswab.org in 2012 to educate people, especially ethnic minorities, about the exact complications facing minorities who need bone marrow transplants. I also wanted to fill a need that I saw around direct communication around what it's like to be a donor, what the statistics are, what the process is like, and interviews with real people who have gone through the donation process recapping their experiences. I haven't done much with Cheekswab in the last several years but my new years resolution for 2015 was to figure out a path forward with it.<p>I live and work in NYC as a software engineer and have a lot of experience running these sorts of drives, particularly on college campuses. Feel free to reach out to me if you'd like to talk, whether about leukemia or bone marrow drives: username at gmail.
I joined the national marrow registry in 1995 while at Fort Benning doing Army stuff. Donated in 1997 to a girl with leukemia. They did the procedure where they drilled into my iliac (sp?) crust.<p>It hurt like hell for 12 hours and then I walked around Washington DC with a rucksack and gear to see our nation's capital. At the time it was a specialized process that Georgetown University was doing.<p>I matched again in 1998, but this time it was not a close enough match.<p>I cannot emphasize enough how seriously I would go back right now and do this all over again, even once a month if I had to. You're saving a life.<p>Statistically everyone has plenty of matches, but the problem is that your blood has to be in the registry so they can test and know. Join the registry, if not for the life you save then the wonderful happiness it will bring for helping a fellow human.<p>Mehrzad - friend - I do hope you find a match. I'll be thinking about you.
If you are living in germany, <a href="https://www.dkms.de/en/become-a-donor" rel="nofollow">https://www.dkms.de/en/become-a-donor</a> has you covered. They'll send you a home kit so you don't even need to leave your house to register.
There are a number of people who are asking about countries besides the US. Because of Bone Marrow Donors Worldwide[0], it doesn't matter where in the world you are and where you register, as long as you register with an organization which shares their info with the BMDW.<p>OP, in case you haven't thought of this already: CISA is the Columbia Iranian Students Association. They may be able to help you reach out to other Iranian friends and family. Turath is the Arab students association; that may be worth a shot too. Great Neck is right nearby, and there is literally a 100% chance that someone at CISA is from Great Neck and will be able to get the word out to the Persian community there.<p>You're from LA so I'm going to guess you're either from Beverly Hills or are in touch with the community there, but if not, someone at CISA will definitely be as well.<p>[0] <a href="https://www.bmdw.org/" rel="nofollow">https://www.bmdw.org/</a>
Good luck with this project. I highly suggest using Google Forms...I don't think the Github/fork model is especially efficient for a signup list.
OP.<p>The US Iranian community is big, if you have flyers or if you could create a simple one pager, I will print and drop it at 5 or 6 Persian stores around the area I live in (Orange County). There are many Persians here, you never know.<p>Feedback for anyone running a Donor Match site.<p>You would think that someone who is willing to help save lives would spend 5 minutes registering, but not always.<p>I went to the site and they are asking me all sorts of questions (just 4), which are COMPLETELY legit, but all I want is to give some information to say I am willing. If I match someone you can email or call me for more information, educate me and such. I may still end up being a 50/50 Yes, but at least I have shown my willingness to help.<p>When you ask a question such as "Do you understand all the implications, etc..." what I am supposed to think? I am thinking let me go and research the implications because I am not aware of all of them, or even 2 of them.
Hi Mehr<p>I'm sorry to hear about this, but glad to know you are determined to fight this back.<p>I'm also Iranian, right now living in Canada. I will register ASAP, hope it can help you or other similar patients.<p>My sister was diagnosed with Leukemia when she was 18 as well (she is living in Iran) around 7 years ago, but she was cured and she is been living a healthy life since then. Don't loose your hope, try to stay positive, you definitely know how important it is.<p>One more thing, I think it's amazing that you have started this thread to discuss this. You can start an effort to raise awareness on Leukemia and use your technology background to reach as many people as possible. Hopefully one day enough people will register in BMDW, so no one has to stay in waiting list any more.
Stupid question but something that bothered me about bone-marrow...<p>Is it something that is limited in quantity and once it is gone it has left your body completely? (it won't regenerate to previous levels)<p>Perhaps any experts can shed light here and help break any misconceptions about this.
Just sent a PR. I actually joined the registry a couple years back on a whim. Thought it would be a good way to help people, although I'll be nervous as hell if actually called up to donate :)
Best of luck.<p>For maximum effect, I'd suggest making an analogue website to go along with the project because at present this initiative is limited to tech people.
First of all, you should put contact info in your github profile, and in
the "about" section of your HN profile (the email field is only visible
to you). Many prefer to discuss health matters privately.<p>The issues you face as an ethnic minority are severe. More than 15
years ago, it was an expensive and error prone nightmare to attempt
doing an international search across all (or relevant) country specific
donor databases. Hopefully things have gotten better since then.<p>If memory serves, there was a national marrow donor database in Iran.
Hopefully, you have friends or family who know Persian well enough to
help you find it.<p>If you are unable to find a donor match, you might want to consider a
cord blood transplant. In short, they use stem cells harvested from cord
blood to rebuild your bone marrow after ablative chemo. It was a highly
experimental treatment method more than a decade and a half ago, but it
did have a number of successes, and the state of the art in treatment
has most definitely improved since then. Yes, my knowledge of leukemia
treatment research is badly outdated.
Hey Mehrzad!<p>Just wanted to say good luck to you as your start your treatment course. I'm in healthcare IT now but I worked on a BMT/Stem Cell Transplant floor as a bedside care provider for nearly 2 years, and my partner is very well respected in that field (we met at work).<p>Anyway, PLEASE make sure you walk a lot on the floor and stay as active as you possibly can. Also, wash your hands before they touch your mouth every single time. Be a fanatic about hand sanitation.<p>For everyone else, especially minorities, please sign up to be a donor. It's a really easy process for you (if you match, you'll get a shot to promote cell generation, and then they'll extract the cells they need), and it literally means life for someone else.<p>If you need anything, reach out @iamkatemcg on twitter and I'll help however I can.
I'm an Israeli with roots in Iraq. I would love to help, but don't know how... How do International donations work?<p>Also, don't know if its relevant, there are a lot of persian jews here in Israel, I'm sure many of them are suitable candidates.
I do have a friend who's family absolutely <i>swears</i> by alkaline water. They heard that it had been observed to help cancer patients in Japan and the machine was a registered medical device in Japan. They bought one and converted everything to using alkaline water.<p>Indeed, my friend's wife's breast cancer was completely cured sans Radiation therapy. I'm not saying it is magic, or even believing that it will help you, only sharing an anecdote from two real people I know who it did work for.<p>It is likely worth considering as <i>an</i> option.
Hi Mehr,<p>I wish you the best of luck. I would donate gladly except healthy gay men can still not donate blood or marrow, despite there being no medical reasoning behind that. I'm sorry for your situation.
Me and all the registered ones I know are registered because the national organisation set up a stand in the university mensa one day.<p>It only required filling out a form and a bit of blood, which took about 10 minutes and was a no-brainer for most of us. I wonder why it is not done more often like this, since it requires very low initiative from the people and will reach everyone who thought 'maybe I should' and then didn't (which are a lot of us).
Joined the registry in 2012, but your post prompted me to make sure they had my latest address info.
Good luck w/ everything! I hope you find your match!
Question: I subscribed to a bone marrow registry a couple years ago, but now I relocated to another country. Should I register again? (both countries are in the EU)<p>I guess that if I'm compatible I will still be notified by the registry in the old country (or at least, my family will be notified)... and it'll only be a bit of an hassle to handle the donation, but it shouldn't be terribly urgent to resubscribe, am I right?
I know this probably can't help you (Canadian, not Iranian), but what would you recommend for Canada? I found this on your links <a href="https://www.blood.ca/en/stem-cells?utm_source=onematch&utm_medium=redirect&utm_campaign=onematch" rel="nofollow">https://www.blood.ca/en/stem-cells?utm_source=onematch&utm_m...</a>, but they say stem cells and up to age 35.
I have a stupid question: what do I actually need to <i>do</i> to be registered? Like, am I going to be driving somewhere to have a needle stuck in one of my bones, or do they just draw blood, or do I just... give someone my name?<p>I'd totally do this if it was laid out in a super simple way, and wasn't going to cause me significant long term harm, pain, or risk thereof.
Not going to share my details on github, but I registered as a bone marrow donor here in Australia a few years back. Yet to hear anything of it, however if there's ever a match I will be very happy to potentially save someone's life. Am also a semi regular blood donor; every drop helps.<p>Seriously hope you find a match mehrzad!
What percentage of patients in your situation are able to successfully find a match? I'm guessing it depends on how many registered donors share your ethnicity. Do you have access to any donor registries in the Middle East, where you are more likely to find a match?
I'm registered in Germany (DKMS), do I have just to put the URL (of course with my other data) <a href="http://www.dkms.de/" rel="nofollow">http://www.dkms.de/</a> in the REGISTERED.md file?
Does anyone know why someone with sleep apnea cannot be a bone marrow donor? I've tried to sign up in the past but I was rejected for that reason.
Good luck. You have my moral support. I hope you have your own personal support network as well.<p>I wish you the best of luck in your treatment.<p>Get healed and get back to the front!
Cancer runs in my family; quite likely it will get me in the end as well.<p>My own experience with other life-threatening illnesses yields the insight that if you are to survive, it is your mind that will enable you to do so. If you cannot overcome the mental challenge, no amount of medicine will help you.<p>A close friend once rang up the US Olympic Bicycling coach to inquire as to how he might make the team:<p><pre><code> "Ride 120 miles every day for the next since months. Call me again after that."
</code></pre>
My friend could ride a lot farther than 120 miles in a day; he really was that good. Even so he did not even try because he was intimidated by the prospect of working so hard for so long.