Register as a Donor with Leukodystrophy Awareness Month

September is Leukodystrophy Awareness Month, and I have wanted to do something to make this month count in a tangible way. As many know, nine years ago I was diagnosed with a genetically inherited neurological disorder called Adrenoleukodystrophy (ALD). Since then, I have gotten involved with great organizations like ALD Connect and have sought to advocate for treatment options and increased awareness about disorders like mine. I was recently watching a presentation on bone marrow transplant (one of the very few potential treatment options for progressive cerebral ALD), and some of the information that the doctor shared really jumped out at me.

I had previously been aware of how difficult it can be to find a matched donor for life-saving transplant, but what was highlighted here were some of the complexities particularly in finding matches for people of different ethnic backgrounds. Since I come from a family that includes a great diversity of ethnicities, this inspired me to perform some more research on this subject. I learned that while a person with a Caucasian background requiring transplant has around a 79% chance of finding a matched donor, a person with Hispanic, Asian, or Pacific Islander ethnic background may only have a 48% chance. Worse still, people with African ancestry currently only have a 29% of locating a matched donor for transplant. While I don't understand all of the science behind the complexities and challenges of finding donor matches, I am very aware of the fact that bone marrow donor databases are urgently seeking more ethnically diverse donors.

Let me share just a little bit about why this is so important to me. Adrenoleukodystrophy is a progressive disorder that can manifest in several different ways, called phenotypes. I have developed the adult form of the disease, called Adrenomyeloneuropathy (AMN), which for now only causes physical disability, without effects on the brain. I have an extensive family history concerning this disorder, with no fewer than 15 members of my extended family being affected. Many years ago, my second cousin developed the childhood cerebral form the disease, which is rapidly degenerative, and he passed away shortly thereafter. Adults can also progress to developing adult cerebral ALD, too - I receive MRIs every year to check for this progression. If cerebral disease develops, one of the only potentially life-saving treatments is a bone marrow transplant. In the last couple of years, I have lost two person friends who also had AMN and progressed to adult cerebral ALD, and this really lit a fire under me to confirm whether I had a matched donor, in case I ever require a bone marrow transplant to save my life.

I was sent a cheek swab kit, and one was also sent to my biological older brother (who has not inherited the disorder) to see if he is a matched donor. Siblings only have around a 33% chance of being a match, and unfortunately, my brother isn't a match in all of the parameters that are evaluated. However, I was assured that the donor database already contains multiple people who are complete matches for me. This gives me some peace of mind that if I ever require a life-preserving transplant, we can move quickly, before my disease progresses further. But not everyone has this assurance. As I detailed earlier, many individuals have far worse odds than I do of finding a matched donor. ALD does not discriminate against any category of person. We know that ALD affects individuals indiscriminate of race and ethnicity, and I want every person who may require a life-preserving bone marrow transplant to have viable options for finding a matched donor.

This is also about far more than just my own disorder. Bone marrow transplants are a necessary treatment for a wide variety of diseases, including leukemias, anemias, immune deficiencies, lymphomas, multiple myeloma, and to replace bone marrow that has been damaged by high doses of chemotherapy and radiation. Chances are that you probably know more than one person personally who is affected by one of these conditions. I care very much that these individuals have every medical option available to them to attempt to preserve their life, and bone marrow donor registration is a critical part of creating these opportunities for them.

So here is what I am asking of you: would you please consider registering in this donor registration drive? The immediate steps are quite simple - you will fill out some information, and DKMS will mail you a kit that you will use to swab your cheek and mail back to them. The chances are actually fairly slim that you will ever be a completely matched donor, but if you do register, there is always the chance that you could be asked to make a life-saving donation in the future. I ask that you please take this seriously and strongly consider your willingness to donate. If you happen to be a person in an ethnically diverse category, your willingness to donate is needed now more than ever! You could literally be the only person on earth who is a matched donor for your "genetic twin" - someone whose stem cells are nearly identical to your own.

In honor of Leukodystrophy Awareness Month, and in recognition of all of the various conditions that require medically necessary bone marrow transplant, I ask again if you would seriously consider signing up for the donor registry. You could be helping to give these individuals every fighting chance to preserve life. I am sincerely appreciative of your time and consideration.