Be The Match

My cousin’s daughter, Emma, was born with a rare genetic disorder, Fanconi Anemia (FA). I copied this from her blog because I think she can explain it better than I can:

 “It causes bone marrow failure and different types of cancers, often including leukemia.  Currently there is no cure.

There are treatments that can extend her life (if successful).  Such as a bone marrow transplant, which is actually a big reason with had our other four children so quickly.  Emma is in severe bone marrow failure, and we knew she was going to need a bone marrow transplant.  We also knew we wanted more children.  We felt an urgent need to have our other children quickly in hopes of finding that sibling donor bone marrow match in time for Emma.  It turns out God has other plans because none of them have ended up being a bone marrow match for her (though, ironically, they each match each other in pairs).

We have Emma on androgens to help boost her blood production.  She had been on blood transfusions for about four months at the start of 2010, but other than that, she is holding her own right now.  When I get more time, I’ll be putting together a page all about Emma and answering many of the common questions that we get.

**Update April 2013:  Emma has entered into more severe failure.  Her immune system seems to barely function when she gets sick.  We had hoped that the androgens would work better than they are.  We now need to do a bone marrow transplant.  As I write this, we are searching for a match.  They are currently testing people to find out if anyone is a match.  All of her blood lines are into severe failure ranges.  She needs blood transfusions, but since we are wanting to transplant (and avoid creating antibodies, like happens from blood transfusions), we are needing to get her to transplant when we can.**”

It breaks my heart learning about what Emma and her family are going through. They are so strong and such an example of courage and optimism.  They recently decided to go forward with a bone marrow transplant and were able to find a match.

I felt so helpless being so far away and wanting to be able to help but not knowing how.

If you were like me then it isn’t clear to you where they find a bone marrow match. I hadn’t thought of it much before this went on with Emma but I guess I just assumed they had a pool of special people for transplants. I knew about being an organ donor because you are outright asked about it when you get your driver’s license but I feel like, at least for me, the process of being a bone marrow donor isn’t as well known. Well it is true they have a pool of donors but those “special people” are regular people like you and me who have chosen to join the registry. After I realized that I knew I wanted to join because I felt like it was some way that I could (indirectly) help Emma. Even though I won’t be the match for Emma, maybe I would be able to help someone else, perhaps even save a life just like another donor is doing for Emma right now

I got the website information from my cousin and jokingly told her I would do a tutorial on the process. She said she’d actually like that so she could share with other people who ask her. Although, she might’ve been kidding too but we already took the pictures so here we go.

Step One: Got to www.bethematch.org and read about the process. Once you decide  that it is something you can commit to then fill out the simple application (mainly just your contact info) and then a questionaire about your health. Basically if you’re between the ages of 18-44 and pretty healthy then you are a candidate. After you fill out your info then they send out your packet in the mail. They say to wait two weeks but mine came within a few days.

I’ve included the letter I got with my packet here because I think it was a little more succinct and explained the process a lot better than the website did.

be the match info sheet

Step Two:  Open the packet you get in the mail and read the instructions thoroughly. (Or not because I’m telling you everything here. At this point you could even throw the instructions away and it’d still be ok.)

Step Three: Remove one of the 4 sterile q-tips from the packaging. There are also 4 barcode stickers. The barcode is unique to each registrant. Place one of the stickers “flag style” on the end of the q-tip stick.

Step Four: Rub q-tip on the inside of your cheek for ten seconds. You will continue with each stick to rub each one in each of the four quadrants of your mouth (one quadrant per stick).

Step Five: When you finish with each stick place them back in the foam holders.

Step Six:  Put everything back in the envelope and seal. Send in mail.

Seriously that’s it. The point of the tutorial was to show that it’s so easy you don’t even need a tutorial. Hopefully this is helpful to someone that’s been interested in being a donor but didn’t know the process. If you have 6 minutes then do it!