My short bio: We are Sam and Alex Kimura, sisters from Louisville, Kentucky who have been traveling all around the country since January 20th, 2015 to sign up bone marrow donors to help people with cancer. We've signed up over 16,000 donors in over 150 cities and found 137 potential matches for patients seeking bone marrow transplants. I (Sam) am one of those patients looking for a match. We decided to go to all 50 states this year to raise awareness for the need for donors (15,000+ patients fighting leukemia, lymphoma and other cancers and diseases need transplants) and to dispel the myths around bone marrow donation.

Check out our website http://sharingamericasmarrow.com

EDIT: A huge thank you to everyone for asking so many questions about donating bone marrow and stem cells and thank you for everyone that shared their story and joined the registry. Because of Reddit, over 2,200 people have joined the registry online! This is AMAZING! We are so grateful to this awesome community.

My Proof: https://twitter.com/ShareMarrow/status/664936139531419648

Comments: 616 • Responses: 60  • Date: 

Elle_Woods232 karma

First - thank you. I've been meaning to sign up for the bone marrow registry forever, but honestly, didn't know how. Now I can say I have, and I hope I match someone!!

My best friend in high school needed a bone marrow transplant, and a stranger was a match and donated to him; that stranger was, and forever will be, a hero in my eyes. Unfortunately my friend lost his battle a few months later. Ever since then, I've wanted to sign up in his name. Now I can say I have :)

My question is - what more can I do to help your cause??

friendlyswabber82 karma

Elle, thank you so much for getting registered! It would be so amazing if you matched somebody. A few thousand Redditers have joined the registry over the past week so we are certain that some matches will come from this awesome community!

I'm really sorry to hear about your best friend. I'm really glad that that stranger donated though, and gave your friend a few more months.

Would you ever want to host your own event? We help people all around the country host swabbing parties or events at their church, school, business. We send you all of the registration supplies and give you a video to watch that shows how to swab people. It's really easy! You could also spread the word on social media! Every bit helps!

Elle_Woods42 karma

I would love to host my own event!! Absolutely!!

(& I'll absolutely be spreading the word, as well!)

friendlyswabber37 karma

Sweet!! That's awesome! Just email [email protected] whenever you want to do it. I can provide you with more details.

Thank you for spreading the word and thanks again for your support and willingness to help!

frankensweater35 karma

I'm late to this thread, but I did want to say THANK YOU! They just found a match for my friend yesterday. Honestly, I didn't think it would happen -- she has an unusual genetic lineage. I cannot begin to express my relief and gratitude. She has a chance at survival today that she didn't have a few days ago. This matters. This matters a lot.

friendlyswabber2 karma

That's incredible news!!!

Pikny63 karma

1) What is the process of registering? (How are samples taken) 2) what, if any, are the "cons" of being a bone marrow donator? 3) is it painful to donate bone marrow?

Good luck in your endeavours and thanks for the work you are doing!

friendlyswabber84 karma

Thank you for your questions and for the support!

1) All it takes to register is filling out some basic info about yourself and rubbing the inside of your cheek with a cotton swab for 30 seconds. You can register online and get a cheek swab sent to you in the mail. Here's the link for that: http://www.deletebloodcancer.org/register?source=sharingamericasmarrow

2) I wouldn't say that there are any cons to being a donor. It is really rare to match a patient because it's based on DNA so if you're a match, it usually means you're the one person in the world that can save that person's life! Major pros to being a donor.

3) It's a common misconception that donating is painful. What most people don't know is that 75% of the time, donating is very similar to giving platelets or plasma. 25% of the time, liquid marrow is taken from the back of the pelvic bone using a hollow syringe while the donor is under anesthesia. How you donate depends on the patient's diagnosis and age. Your marrow/stem cells regenerate in a few weeks so you're not giving away anything permanently.

una_ragazza36 karma

Do I need a health insurance for this? If I'm one of the 25% of cases where bone marrow donation is necessary would I have to pay for the anesthesia and whatnot? I've wanted to register for this but I'm a broke college student so I have to make sure I actually can do this.

BlueApple431 karma

I believe that the recievers insurance covers it. Cause its not you recieving the care.

mainman87917 karma

I'm thinking of becoming a donor so if I do this would be completely free for me as in absolutely no fees I have to pay right?

friendlyswabber3 karma

Coldbeam3 karma

I wish you would be more honest in your answers. Side effects are not serious, but they are common. You really don't have to lie to get people to sign up, especially if they are trusting you to be a knowledgeable (and truthful) source for them. Between this and roping guys in from Tinder, to be honest you guys seem like you're more interested in getting as many sign-ups as possible, instead of being ethical and caring about these potential donors. It seems kind of shady, which is really unfortunate since it is such a good cause.

friendlyswabber1 karma

Sorry you feel this way. We did say there is no pain during the procedure because you are under anesthesia during the procedure, so you don't feel anything. We make sure everyone that signs up know that they can be sore in the days following donate. We tell people that it might feel like they slipped and fell on the ice and have some bruising. What we DO emphasize is that your discomfort for a few days is nothing compared to what someone who is going through cancer or a blood disorder has been going through, most times for years. And we hope that you would be okay with being a sore/uncomfortable for a few days, maybe even a few weeks (which will go away) to save the life of someone who would die without you, who has been in pain, doing incredibly uncomfortable treatments for probably years. We are going to do everything we can to find matches for patients. Its a matter of life and death. We hope you realize that and start being more upset that there are people dying because people won't sign up, instead of being mad at us (two single girls) for going on dates with people and telling them about the most important part of our lives.

PottsAndPanz36 karma

What pushed you guys to do this?

friendlyswabber69 karma

I (Sam) was diagnosed with a rare disease called aplastic anemia in 2010 at age 17. I was told that a bone marrow transplant was the only cure. Unfortunately, I couldn't find a matching donor. We are searching for a match for me but also for the thousands of other patients in need of a transplant.

PottsAndPanz28 karma

That's dope, much respect

friendlyswabber27 karma

Thank you! We appreciate the support. If you or someone you know wants to sign up as a potential donor online, you can go to http://www.deletebloodcancer.org/register?source=sharingamericasmarrow!

raven1245612 karma

Is there any difference between this registry and the one at bethematch.org? I registered with that one a few days ago. Do they put you on the same registry list, or are there multiple list?

friendlyswabber3 karma

It is all one list but we sign up people with Delete Blood Cancer here: http://www.deletebloodcancer.org/register?source=sharingamericasmarrow

tsyilc3 karma

respect and good luck!

friendlyswabber3 karma

Thank you so much! We really appreciate the support!

larswo10 karma

Hello Sam. In 2009 I was saved by a bone marrow transplantation. I spent 3 months in one of the biggest hospitals in Denmark. Now I have a french bone marrow and I'm going strong. A lot of my friends and family have singed up after hearing how big of a struggle it was to find a match for me, because my blood type and DNA is rare. I've also participated in a few events and interviews about bone marrow stuff.

Keep up the good work, I doubt if I would be alive today if it wasn't for people spreading the word about becoming a bone marrow donor (it's surprisingly easy to become one, because you just sign up, have a few tests done and then you wait.)

friendlyswabber3 karma

Thanks for sharing your story with us, we're so happy to hear that you're here and doing well today and still acting as a advocate for this cause! You're right it is so easy to sign up now and you don't even need to leave home to do it...now people can get signed up online though http://sharingamericasmarrow.com/involved/register/!

Woyaboy10 karma

How rare are marrow matches? What makes it so you just can't get it from anybody?

dubsitte13 karma

Recent stem cell donor here; odds in the US are 1 in 540 according to bethematch.org. If you're familiar with red blood cell donation and the requirements for matching someones blood type, marrow donation takes this to the extreme. The recipient's immune system is replaced by the donor's, so there's a lot of things that can go wrong. You know how your immune system reacts when it comes into contact with germs and other things from outside your body? Just imagine your immune system now implanted in someone else's body. Every recipient experiences some form of graft versus host disease. Finding a close as possible match has to go way beyond a similar blood type to try to limit the reaction to the disease as much as possible.

friendlyswabber4 karma

You rock.

friendlyswabber21 karma

We also wanted to go on an adventure and do a major bucket list journey. We brought along our best friend Taylor to add to the adventure. And we figured that hitting the road and going to as many cities as possible would be the best way to raise awareness.

Glorypants35 karma

Do you guys think your table gets more visitors and people to sign up because you're young, pretty girls?

Being approachable can go a long way with strangers on campuses.

friendlyswabber60 karma

Actually, we really struggle to get anybody to come to the table to sign up because people are so freaked out by bone marrow donation. Living on the road full-time also makes you look a little rough and there are many days that we don't even brush our hair. So that doesn't exactly draw people in, and either do the words "bone marrow registry."

Glorypants18 karma

Have you looked in to any ways to get around the "bone marrow donor" scare to people who don't know anything about it?

The word "donor" scares me and most people because it makes people think of kidney donor, or organ donor (post-mortem). Maybe put somethings up pointing out that finding a match is super rare in the first place, or that the donation has no lasting effects?

friendlyswabber23 karma

Yeah, those are good ideas. We brainstorm a lot about different ways to market it so that people are more receptive but there's just so much information involved with it that it's difficult. When people walk by our table we usually ask, "Hey do you have 4 minutes to help us fight cancer for free?" just to get people to stop so they can hear us out. There is so much education needed on this topic and the fact that the majority of people we encounter have never even heard of donating bone marrow, is really difficult.

YouCanBeMyWingman36 karma

"One in 1000 chance you could save a life. Get your free cheek swab today and find out!"

potentially while screaming: Yes. Donate today and you may hurt. Run and you will live, at least awhile. And dying in your bed many years from now, would you be willing to trade one day of pain, for one chance to come back here as young men(and women), and tell your doctor that they make take our marrow and save another, but they will never take our freedom? Alba gu bràth!! Alba gu bràth!!!

friendlyswabber17 karma

Hahahaha. Never before made the Braveheart/bone marrow connection. Well done.

HemHaw10 karma

My father was a survivor of leukemia.

He was on the donor list, but had no matches.

Miraculously, he survived on chemo alone. I would not exist if he wasn't a fighter like he was.

Because of this I can't stand to let someone go through the same gamble. If you need my marrow, you're god damned right you're going to get it. I just wish my brother felt the same way.

Thanks for all you do. Not enough people out there are cognisant about signing up for the bone marrow registry. It's one of the few things these days that really does need awareness raised about.

friendlyswabber2 karma

Thank you for sharing. We are so glad to hear your dad was able to survive on chemo. Thank you for the way that you feel about donating your marrow! And thank you for the encouragement!

ehehtielyen7 karma

But is it really a bone marrow donation or a donation of mobilized stem cells? Here in the Netherlands, donors get r-GCSF for a couple of days and the stem cells can then be harvested from the peripheral blood. Only in small children (less blood volume) they still do the bone marrow aspiration under anesthesia thing... (Source: MD). Though the procedure is still quite a hassle and not a walk in the park, it's much less scary than multiple iliac crest punctures and engraftment rates etc are the same.

hg575 karma

I wondered the same thing and it was pretty much answered here;

I'm glad you're thinking about donating! If you donate blood stem cells (which occurs 75% of the time) you receive 5 days of an injection of something that boosts your stem cell count. I have talked to people that have received the injections and donated and they said they felt kind of crappy from them. But they could still go to work/school/do normal activities. After donating, you shouldn't have any side effects besides possibly a temporary bruise at the needle site (happens sometimes when you give blood) and maybe some fatigue. But that goes away and your stem cells regenerate in a few weeks so you're not giving away anything permanently. And you are only asked to donate if found to be a DNA match for a patient, which is super rare.

ehehtielyen5 karma

Thanks for the info! Then I wonder why they still call it bone marrow donation and not stem cell donation if it apparently makes such a difference in public perception.

friendlyswabber2 karma

We have gone back and forth with if we should call it stem cell donation. When we have time to explain the whole thing (that 75% of donors give blood stem cells and 25% of donors give bone marrow), we do. Unfortunately there are a lot of negative connotations around "stem cells" in the US, so we aren't sure what is the best way to talk about it. We will keep working on figuring it out though!

occupyattic32 karma

What are some of your favorite stories so far from being on the road?

Glad you all are doing this. Best of luck with the rest of the trip!

friendlyswabber87 karma

We sometimes use Tinder to get guys to sign up to the registry. It's a great way to get a captive audience! Also, young guys typically make for the best donors.

We've done some amazing hiking too. Zion National Park, Glacier, Acadia...all incredible places that we've loved.

Thank you so much for your encouragement!

EDIT: We were kind of joking about "using Tinder." We are single gals living on the road, using Tinder to meet people and go on real dates. We talk about what we do and most guys we go on dates with ASK to sign up to the donor registry, which is awesome. And very attractive.

EDIT 2: One of us met our significant other who we have dating for almost 3 months "using Tinder". Hey guys, it works!

Amxri41 karma

so you're literally the "check out this cool website where you can do this shit to help these people" girl on tinder.

friendlyswabber17 karma

Haha no, we were kind of kidding. We are single girls who go on dates and then just tell people about what we are doing, and then most guys sign up, because they are awesome people. That is why we swiped right on them.

nhexum3 karma

I'm all for helping your cause but unless you make it clear that this is what you're looking for before they match you this is really lame.

friendlyswabber17 karma

We are also mostly looking for love, thats why we use a dating app. When you give up your jobs and live on the road for a year, you talk about it when you go on dates. And then nice guys sign up because they want to help.

cynikalAhole9925 karma

Are you rich? How can you afford to do this not having a job?

friendlyswabber41 karma

We received our 501c3 status in November of 2014. We have been fundraising since then. We have also received a few grants.

cynikalAhole9916 karma

cool...good luck!

friendlyswabber15 karma

Thank you so much! If you want to register as a potential bone marrow donor, you can do it on our website using this link! http://www.deletebloodcancer.org/register?source=sharingamericasmarrow

kovixen22 karma

Which states haven't you hit yet?

friendlyswabber30 karma

Louisiana, Arkansas, and Hawaii.

Ruzt14 karma

I hope you're saving Hawaii for last.

friendlyswabber2 karma

We are!

Zilzza11 karma

Arkansan here. You should definitely come and go to the U of A in Fayetteville.

Side question, Arkansas is close to Kentucky. Any reason you've not been here yet?

friendlyswabber6 karma

We did a counter-clockwise loop of the country, and Arkansas is on the way back, based how we planned our route (mostly to avoid harsh weather). We are going to UALR! Wish we had time to go to UofA too!

PM_me_guinea_pigs8 karma

How did hit Alaska before Louisiana or Arkansas?

friendlyswabber2 karma

We flew to Alaska from Seattle back in September.

codyb68615 karma

I think what y'all are doing is great for yourselves and everyone your helping along the way. Enjoy the journey! I found out about your trip on reddit so I'm glad you two are doing this.

Do you gals have it planned out where you're going or are you just kind of planning as you go? Also, what are some states that you are looking forward to check out that you haven't yet?

friendlyswabber17 karma

Thank you so much for your kind words! It really means a lot to us. And having our story featured on Reddit was incredible. Over 2,000 people have joined the registry online in the past few days. That's our biggest spike!

We planned the route we were gonna take over a year ago based on weather patterns, university calendars, and just the best way we could hit all 50 in a year. We then planned our events a few months ahead of time, so we've been planning as we go for most of it. Well, it's kind of crazy that we only have 3 states left but I've been really excited to get to Louisiana to see New Orleans. Also, Hawaii is going to be undoubtedly amazing. We were pumped to go to North Dakota back during the summer because we had never been!

codyb6869 karma

That sounds so exciting. I checked out your insta after writing my question and saw you already made your way to Michigan. Hope you enjoyed your stay.

I was going to say if you haven't been here yet, I work at a company in Detroit that has 12,000+ employees. They would probably be so down to let you ladies set something up.

friendlyswabber13 karma

Thanks for checking out our instagram! We loved Michigan. We saw a Bahamas concert in Ann Arbor and that was a lot of fun. Detroit was a fascinating city. Man, I wish we could have known about each other! If you ever want to host your own event at your company, we'd be happy to help! We would send you all of the registration materials and give you a link to a video that showed how to swab people. We help companies all over the country set up their own events. So if you ever need a philanthropy or community event, you can let us know! Our email is [email protected].

alkim615 karma

What is your least favorite state?

friendlyswabber36 karma

I wasn't a huge fan of Delaware. And if we're talking cities, Virginia Beach is not my jam. Missouri is not high up on the list for Alex.

hipinky10 karma

What happened in Missouri, Alex?!

friendlyswabber4 karma

Alex here: we had a hard time getting people signed up in St. Louis, I think because it was so hot (we were there in July)! I'll give St. Louis another shot though...

silentbuttdeadly24512 karma

I am 18 and I am thinking to donate. Are there any side effects to donating stem cells?

friendlyswabber31 karma

I'm glad you're thinking about donating! If you donate blood stem cells (which occurs 75% of the time) you receive 5 days of an injection of something that boosts your stem cell count. I have talked to people that have received the injections and donated and they said they felt kind of crappy from them. But they could still go to work/school/do normal activities. After donating, you shouldn't have any side effects besides possibly a temporary bruise at the needle site (happens sometimes when you give blood) and maybe some fatigue. But that goes away and your stem cells regenerate in a few weeks so you're not giving away anything permanently. And you are only asked to donate if found to be a DNA match for a patient, which is super rare.

figbar1211 karma

Have you picked up any hitchhikers?

friendlyswabber14 karma

We have not. Doesn't mean we haven't thought about it. Typically our van is so full of junk that we don't have room for anybody else.

Jonah14710 karma

What's the most amount of pizza you've ever eaten in one sitting?

friendlyswabber12 karma

Brilliant question. Sam here. I'd say 7 or 8 slices. Probably about the same for Alex.

Hodorlicious10 karma

How do I register in Canada?

friendlyswabber12 karma

You can just go to onematch.ca!

Thank you so much for wanting to register!

Hodorlicious4 karma

Thank you for everything you're doing!!

friendlyswabber3 karma

Thank you for the encouragement! :)

Viking_Civics8 karma

What software are you using to track contact info?

friendlyswabber12 karma

We work with an organization called Delete Blood Cancer. They provide us with all the registration materials and they process and store the contact information as well as do the actual DNA typing of the swabs. We regularly ship our completed swab kits off to their offices in NYC.

cent668 karma

I got 2 questions.

  1. How did you decided on which cities to visit?

  2. Between the two of you, who would you call a brat?

friendlyswabber20 karma

We chose big cities, college towns, and cities we've always wanted to visit. We had a huge list in the beginning but we had to really narrow it down. I guess 150 is still a lot.

Alex would be considered the bitch. So I guess that makes me the brat.

YouCanBeMyWingman8 karma

Did you climb angels landing while you were at Zion? Is there a place that someone can go to signup/get tested at the same time? I assume they need a blood sample or marrow sample or something to determine your type?

friendlyswabber11 karma

Yes! We did Angels Landing! Alex and I are both pretty afraid of heights but we've been slowly getting braver over the year. I can confidently say it was the most incredible thing I've ever done. The views were mindblowing.

It's even easier than that! You can fill out your contact information online and then a cheek swab kit is sent to you in the mail. You rub your cheeks with a cotton swab for 30 seconds and then send it back in. That's it. You can do all this at http://www.deletebloodcancer.org/register?source=sharingamericasmarrow!

YouCanBeMyWingman3 karma

Easy enough, will do. Check out Beehive Trail if you find yourself in Maine again @ Acadia NP. Maybe not as cool as Angels Landing, but a fun climb.

friendlyswabber4 karma

Thank you!

Definitely will. Acadia remains one of my favorite places I've seen all year, so I'll be back. We did Sargent Mountain when we were there and didn't see a single soul for 3 hours. It was magical.

Filthy__tosser7 karma

This sounds great! I appreciate what your doing. I went to the website to register, but I have one Big question, Can you better explain this statement? (obv not law type guy); "Delete Blood Cancer reserves the right to change, modify, add or remove portions of this Privacy Policy at any time for any reason. Such changes shall be effective immediately upon posting at this URL, and shall apply retroactively to any information previously collected by Delete Blood Cancer . Please check the Privacy Policy each time you visit this Website for the most current version. You acknowledge that by accessing this Website after Delete Blood Cancer has posted changes to this Privacy Policy, you are agreeing to the terms of the Privacy Policy as modified." For some reason from a very basically informed person, this frightens me, especially when they want my SSN and DNA. As well, why does it matter if im in the service?

Just curious. Thanks

Good answers warrant @least one more donor

Edit; words

friendlyswabber2 karma

We aren't entirely sure since we aren't Delete Blood Cancer and just work with them to register donors. We do know that your information is kept safe and private and only HLA type is determined, not a full DNA sequence. Also, your SSN is optional so you don't need to give it in order to sign up! If you are in the service or reserves you have to sign up through the department of defense. You can do so online at www.salutetolife.org.

Sancho_Villa7 karma

I saw your story on ESPN. Love this. Love seeing the proactive and empowered approach to something so devastating. Can I ask how you fund this? Both personal needs (gas, food, etc) and medical needs. Insurance? Family assistance?

friendlyswabber8 karma

Thank you so much!

We started a 501c3 and we've been fundraising for the past year and a half. Most of our money comes from private donors around the country that have either seen a media piece on us or have heard about it through word of mouth. Family and friends of family have been a huge help as well. Financial donors know that their money covers gas, food, lodging, marketing items, etc. Outside of basic travel needs, we pay for our own expenses and we are young enough to still be under our parents' insurance.

On ESPN?? Really?! Where?

Mynock336 karma

Do you make it a point to explain to college students and those with unsteady jobs or low income that they should really give a lot of consideration to the potential financial hardships of signing up?

The expenses for the procedure are covered 100% but recruiters always forget to mention that you are not compensated for time away from work or school. Between tests, travel, procedure, and recovery, students could forfeit a whole semester if the timing is poor (mid terms/finals) and people living on tight budgets could miss a couple weeks pay, even for the 'simple' version of the procedure. It's no big deal if you're matched close to home but there's often travel involved, no?

This is a great cause and in most cases, there is zero need to be concerned about the pain or risks of the procedure itself, but surely people have the right to know that it's not a good idea to sign up until you can afford to do so?

friendlyswabber5 karma

You bring up an interesting point. However, as you said, the procedure is paid for 100% and if the donor needs to travel, the costs of that are covered as well. The donor is put up in a hotel and all meals are paid for during the donor's stay in that city. If you have to miss work, many companies will offer some form of paid leave, although many companies will not. Delete Blood Cancer can also work with you to try to cover compensation lost. Missing work or school will have to be something that the donor will decide for themselves. To my knowledge, the registry that you sign up with will do a fairly good job of working with your schedule (i.e. making sure you don't miss midterms, huge things at work, time with your kids, etc.). I actually just talked to a guy who donated a few years ago that was getting ready to start a new semester at college and he asked if he could donate a whole month earlier than they asked and they obliged and freezed his cells. If you match, it usually means you are the one person in the world that can save that patient's life so the registry will do their absolute best to work with your schedule, make you feel comfortable, and not put you out in regards to your normal routine and way of life.

BendyMouse5 karma

I registered maybe 10 years ago when they still took blood (Yes my info is up to date and I still get the newsletter). What are my odds of ever being called?

friendlyswabber7 karma

That's so awesome that you've been registered for 10 years! The odds are pretty slim. It's hard to put a number to it since DNA is so individualized but it's about 1 in 500 that you'd ever get called as a potential match and 1 in several thousand that the stars would align and you'd go on to donate (a lot of factors come into play - mainly regarding the patient's health prior to transplant). Also, the older you get, the less likely you'll be called. But it doesn't mean you won't get called. It's basically like winning the lottery!

A-A-RONBURGUNDY4 karma

If were to do it again, what would you do differently?

Also

Late to the thread but I want to help dispel a myth you hear all the time.

I donated bone marrow the traditional way more than a year ago. I was under anesthesia during the brief procedure so I felt nothing during it. After, I had a minor lower back ache. It felt like I had slipped and fell on ice.

I took it easy for a few days after and was 100% within a week.

I recently made contact with my recipient who is living a much improved life.

I hope you all get more people to sign up. The donor side is so simple and potentially life changing.

friendlyswabber2 karma

Thank you SO much for donating and for helping dispel the myths! You are awesome and we really appreciate the support.

If we were to do it differently, we would have used social media more to spread the word. Things like Snapchat, Yik Yak, etc. are huge on college campuses where we host most of our events and we just didn't know how to use them. We have learned so much this year about ourselves, about running a nonprofit, about travel, etc so there is not much we would change about the experience, even though it hasn't been easy!

Mine10blox3 karma

what was your favorite state to visit and why?

friendlyswabber13 karma

My favorite state - or at least one of my favorites - was Oregon. Portland is such a cool city with a great vibe, good food, awesome foliage. You got great hiking and the beach. Perfect.

Alex here: I loved Montana. Glacier national park was amazing and the glacier IPA was quite tasty. All of the west was incredible, really.

elsynkala2 karma

This is a very selfish question I'm sorry. I have a huge fear of needles. I can't put earrings in sometimes and I have a hard time watching other people get shots. I've put off having kids because I'm so scared of blood tests and IVs. I want to be a donor but I'm truthfully terrified of a needle. How much "needle work" is there? I saw you said you can be put under for the donation portion: that would work for me!!! Is there any other "needle needs"?

friendlyswabber2 karma

There are needles involved in both forms of donation and some blood work is done before donation to ensure that you are indeed a perfect match and in good health. We understand if you're terrified of needles, but you can encourage your friends and family to get signed up online instead http://sharingamericasmarrow.com/involved/register/

Fkeu2 karma

Is there a universal bone marrow donor, like there is for blood type?

friendlyswabber3 karma

No, there is not a finite number of "types" for bone marrow matches. Matches are so rare because they are based on a specific DNA sequence called HLA type. If you do match with someone, you could very well be the one person in the world who could donate to that patient, which is why it is so important to get more people signed up to the registry!

PotsyWife2 karma

Are there any exceptions to being able to donate bone marrow? i.e Anaemia, certain medications etc?

friendlyswabber2 karma

There are quite a few exceptions, to protect you and the patient. Check out http://www.deletebloodcancer.org/register?source=sharingamericasmarrow and if you start the process of registering, they should ask you health questions.

TaliaChi19792 karma

I wish you all the best and I hope you reach your goal and find a donor. I would love to give, but I do have a bad back. Can someone ELI5 to me why I can't donate with a bad back?

friendlyswabber3 karma

Thank you for your support and for wanting to give! You can still register, even with a bad back, as long as you haven't had surgery on your back within 2 years or if you don't have to take daily prescribed pain medicine for it. [email protected] or 212.209.6700 can answer more specific questions about it if you want to reach out to them! Thanks!

ramma3142 karma

How do you feel about the strict limitations placed on who can and can't register?

I've tried to register so many times, even had my HLA type tested, yet am perpetually denied because of the treatments used for my chronic pain (narcotics). I understand they need to be cautious, but it really bothers me that even after years of showing no potential of overuse that I can't get listed.

It doesn't help that I used to do cancer research too. I actually collaborated on a project with one of E. Donnall Thomas' colleagues who helped in the development HSCT.

friendlyswabber2 karma

We wish the rules were different too, but we understand that they don't want to take any risks in having potential complications for the donor or patient. You are awesome for wanting to help. If you want to talk to the medical team at Delete Blood Cancer, they might be able to re-evaluate your situation: [email protected] or 212.209.6700.

Quick_Question_Q2 karma

I lived in Europe for several years so I can't donate blood in the US. Can I donate bone marrow?

EDIT: I signed up anyway. An anonymous blood donor saved my life when I was born so I'm happy to be able to pay it forward in one way or another. Good luck to both of you.

friendlyswabber2 karma

Thanks for signing up! And yes, it is okay to donate marrow if you have lived in Europe. Thanks again!

duktapebra2 karma

I was told not to register because I have had anaphylaxis to a wasp sting and that makes me unqualified to even try. Is that true?

friendlyswabber2 karma

Bummer...I have not heard about that one. Who told you that? It is possible that you would be unqualified. Since donating marrow or stem cells is a voluntary procedure, they have to make sure that there would be no major risks to you. But did you check this website? http://www.deletebloodcancer.org/register?source=sharingamericasmarrow

velawesomeraptors2 karma

I am registered to donate and have been for a while. I was matched with someone about a year ago and got blood tests and everything, but unfortunately something happened on the other end and I wasn't able to donate.

My question is, if you were called to donate once, are you more likely to be called a second time? I'd like to have another chance in the future.

friendlyswabber2 karma

Thank you for wanting to donate so badly! That's awesome.

You know, I am not totally sure on that one. If you are a young person (between 18-26), you are more likely to get called. There's a chance you may also have a more common HLA type. But I don't think if you were called once it necessarily means you'll get called again. It's such an individualized thing. But I certainly hope you'll get another call!!

Tehdren2 karma

Hearing about this campaign is what finally pushed me to go to the website and sign up. Thanks for that. Are you doing any events in Southern California?

friendlyswabber2 karma

SWEET! We're so glad you decided to get signed up! We actually already stopped in Southern California about a month ago. We had a big event at Ventura College and UCLA. We tried to get something set up at a college in San Diego but it didn't work out. If you ever want to host your own swabbing event, we'd love to help you do that!

eldeeder2 karma

My cousin was saved by a bone marrow transplant from someone he'd never met. It inspired me to sign up for the registry. When I went to the hospital, they wanted me to pay them $300.00! Why do hospitals seem to want to discourage potential donors?

friendlyswabber2 karma

I'm so glad to hear that your cousin was saved by a transplant!

That's a huge bummer. So you went to the hospital to sign up to the registry and they were going to charge you that? Weird. But you can sign up online for free at our website! http://www.deletebloodcancer.org/register?source=sharingamericasmarrow

calvintheanarchist2 karma

Hi, you are doing an awesome job! I was just wondering why I am not allowed to donate (Type 1 Diabetes, Coeliac Disease and Hypothyroidism). Like what is the actual scientific reason? It make sense to me with my ailments, I just want to understand why I can't help!

friendlyswabber3 karma

Thank you for your support! Thank you for wanting to help. They will not accept any donors that would have increased risks from donating, or that could potentially put the patient at risk for complications. Auto-immune diseases could be passed on to the already very very sick patient, greatly risking their recovery and longterm health. Your ailments could also increase your recovery time and potentially lead to complications for you.

Chezzabe1 karma

Wasn't there an AMA on you guys like 2 days ago?

friendlyswabber2 karma

We posted one briefly but took it down after two minutes because we didn't understand how it worked haha. We are new to Reddit but loving it!! So grateful for everyones support- over 2,000 Redditors have signed up online to the bone marrow registry this week! AMAZING

caprizoom1 karma

Hi, a great effort you are doing. I live in the middle east and down here as to my knowledge we don't even have bone barrow registry. What are the chances of organizations such as yours operating internationally?

friendlyswabber2 karma

Thank you so much for your support! Each country operates their own registry but doctors often search internationally when a patient is looking for a match. I recommend using this website to see if your country has a registry. I hope they do! http://www.bmdw.org/index.php?id=addresses_members&no_cache=1

dorkyfish1 karma

How hard was it to adjust to constantly traveling? Worst part?

Thanks for being an inspiration!

friendlyswabber3 karma

Thanks for your kind words!

It honestly wasn't nearly as hard as we thought it would be! We got used to it really quickly and it has become such a normal part of our lives now. The worst part has probably been not being able to eat super regularly or healthfully. Living out of a backpack is kind of annoying but it's so much more doable than I ever imagined. But traveling is a lot more lonely than we expected! Not knowing people in a city gets kind of hard.