Finding a stem cell donor can be very difficult. There are lots of willing donors, but selflessness is not the only criteria. Like blood types, the body will reject a stem cell transplant from someone that doesn't share a close enough human leukocyte antigen (HLA) type. Many people have had a simple test to determine their HLA type and then had this information stored in a national bone marrow donor registry so that people like Elise can find a donor match. The test is a simple swab of the inside of your cheek.
An HLA type isn't just a letter and symbol like your blood type (e.g. O- or A+), rather its two strings of several "letters", one inherited from your mother and one from your father. So the chances of matching becomes a game of statistics. To minimize the chance of rejection, doctors try to find an "8 of 8" or "10 of 10" donor match.
What I didn't know was that HLA types tend to vary based on ethnicity so that people tend to best match other people from similar ethnic backgrounds. And as you'd expect, the donor registry largely reflects the makeup of the country. What these two facts mean is that if your ethnicity is not well represented in the database or if its "mixed" then your chances of finding a suitable donor drops. I've read that chances of finding a donor in the US are nearly 100% if you are of European descent whereas if you are of Asian descent this statistic drops to something like 30%.
Fortunately for Elise, both Becky and I are pasty-white offspring of European lineage: when they ran a low resolution HLA type test on Elise there were more than 500 "8 of 8" matches in the registry. Since then she's had a high resolution scan and I've been told there are multiple "10 of 10" matches. So it would appear this won't be the worry for us that it is for many other people. I'm very thankful for that.
Be The Match. It's FREE and PAINLESS to register as a potential donor on the National Donor Registry. Go to BeTheMatch.org to confirm you meet the guidelines (only ages 18-44 need apply) and then they'll send you a free swab kit that you'll return to determine and register your HLA type.
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