Everyone that know me knows I have a bucket list and I'm constantly adding to it. It's mostly travel destinations or childhood dreams or crazy experiences. Typical stuff. But, a few months ago I added 'join a bone marrow registry' to my bucket list. I know it doesn't sound exciting and sexy as "running with the bulls" or as dramatic as "save a life"... Although ultimately, I could save a life by joining if I'm a perfect match with somebody!
I'm adding 'join a bone marrow registry' to my bucket list because this past September my 17 year old cousin Katie was diagnosed with 'Myelodysplastic Syndrome' (MDS). It's a life threatening disease that is only curable with a bone marrow transplant.
Because I know very little about this process I thought it was as simple as matching our blood types. But, as I’m learning, finding a match means much more than locating someone with Katie’s blood type. If I can take the liberty to simplify it, bone marrow matches are based on DNA-testing called HLA typing. HLA’s are markers found in cells and your immune system uses these markers to recognize which cells belong in the body. The closer the match between the HLA markers in a donor and Katie means less chance that her immune system will reject the donor’s bone marrow. And, hopefully a chance for Katie to be able to lead a long, healthy life.
The marrow registry we're going through is called onematch.ca. I noticed that the process varies a little from country to country, but in most places if you're between 17 and 60, a registry will send you a free buccal swab kit in the mail. You'll then swab your cheeks, send it to a lab, and you won't be contacted unless there's a match. It's very easy to do. Liam and I signed up online and within a week we received our buccal swap kits. Tonight we swabbed for Katie and now we are officially on a bone marrow registry.
Registering was easy but, finding a marrow match is hard, even within our own family. Katie's two brothers and younger sister were tested. They are all matches with each other but not with Katie. FACT: Katie's best chance of finding a matching donor is within her own ethnic group. While two out of three Caucasians find a match, the chances of a patient from another ethnic background is even lower. For a multiracial person, like Katie (Chinese, Jamaican, Spanish, Irish) the chances are usually even worse. I am also multiracial (Chinese, Jamaican, Spanish). Liam, my son, is even more mixed (Chinese, Jamaican, Spanish, Scottish, Slovak). So, we might have a good chance of matching Katie. I don't know the exact numbers but I've been told that finding a match for a person of multi-ethnicity is compared to winning the lottery which is very disheartening.
I guess part of the problem is that there aren't enough ethnic marrow donors. I think I'm like most people. I had a lot of negative misconceptions about donating marrow. I assumed it to be a painful experience… until I googled it. About 70-80% of the time, the donation is done through something like a five to six-hour blood donation. Sometimes, surgery is performed to extract liquid marrow from the back of the donor's pelvic bone. This day surgery, performed under local anesthetic, can leave your lower back a bit sore for a few days. But, as I see it, If saving a life meant a bit of discomfort… why wouldn't I do it?
Okay, here's the marketer in me… Knowing that there aren't enough mixed race donors, I would like to do my part to raise awareness and to get people — especially of mixed ethnicity — to sign up for a marrow registry. And, I need your help to accomplish this, using Facebook, Twitter or good ol fashion word of mouth, please help me spread the word around the world. Ambitious? Maybe but isn't that what social media is about? And by doing so perhaps together we can find a perfect match for Katie somewhere out there.
If you yourself are interested in joining a registry and you are a Canadian resident please go to onematch.ca. For other countries, contact your local Bone Marrow Registry for testing, then contact onematch.ca with your results.
I know it's a big decision. But, hey do what I did add it to you bucket list maybe one day the motivation will strike you to register. As they say, it's never to late to give.
