On the Bone-Marrow Registry

Kristi, a doctoral student that underwent a bone marrow transplant last year, tipped me off that there was a bone marrow donor drive at the student union this afternoon, so Cristina and I strolled Bertrand over to sign up.

The process is remarkably easy, fast and painless. We just filled out some contact info forms, swabbed our cheeks four times and that was it. We'll be on the registry until we're 61 now. (We certainly don't ever plan on opting out.)

They were really excited to get Cristina on the registry, because Hispanics are highly underrepresented, giving them a lower probability for finding a match.

I wish I'd found out sooner so I could have spread the word, since the cost of the testing (normally $50) was covered by a grant. We're in touch with the Utah bone marrow folks now, so we'll know when the next one is ahead of time. We'll be sure to broadcast the next donor-registration drive in advance, so anyone that who would like to join can sign up.

Naturally, Bertrand charmed everyone.

Game plan

Several of you have been asking, "How do I get tested for bone marrow compatibility?" The short answer is: If you're willing to test and donate upon a match, send me or Cristina your email address, postal address, phone number, blood type (if known) and HLA type (if known). We'll contact you if we need you to test. (We're going to construct a priority-ordering on the probability of a match to avoid over-testing.)

Our rapidly evolving strategy has ranked the experimental treatments according to the likelihood of success:

1. Cord-blood transplant. This works like a bone-marrow transplant, but with the stem cells from umbilical cord blood. One of Bertrand's cousin's cord blood was banked, and has been offered. We don't yet know if he's a match, but with cord blood, it doesn't have to be exact; the risk of rejection is lower; and the chances of Bertrand having a shot at a longer life are higher. Bertrand's own cord blood was saved, but it can't be used because it too contains the genetic defect. If you know anyone that's expecting, please ask them to consider cord-blood banking. It may save Bertrand's life, but it could also save their own life or their child's life or some other person's life. (You can also donate your cord blood to a public cord-blood bank.) New cord-blood-based treatments for all kinds of diseases are being discovered every year, and they're far more potent and risk-free than standard treatments. We banked Bertrand's blood with CBR, and we've been happy with their service.
   
2. Bone-marrow transplant. If Bertrand isn't eligible for a cord-blood transfer, or we can't find a match, we'll try a bone marrow transplant. Bone marrow isn't actually bone. It's a goopy substance inside bones that contains many kinds of adult stem cells. Adult stem cells are not as flexible as umbilical cord stem cells, which are, in turn, not as flexible as embryonic stem cells. As a result, the bone marrow match needs to be exact for there to be any hope of it succeeding.
   
3. Enzyme replacement therapy. About five of the fifty lysosomal storage disorders have an enzyme replacement therapy available requiring weekly injections of the missing enzyme. If Bertrand isn't eligible for a marrow transplant, this may be our only option. These therapies are only temporary, however, since they cannot protect the brain from decay.
   

If it comes down to bone marrow, we've sorted the options by likelihood of finding a match:

1. First, we'll try the national registry.
2. If there's no match on the national registry, we'll ask close and distant family members that have volunteered to test.
   
3. If there's no match among close family members, we'll ask everyone else that has volunteered to test.

If you're fired up and you'd like to test anyway, you can join the national registry. If you join, you may be asked if you'd be willing to donate if you're ever found to be a strong match for someone else. To join the national registry, you can order a cheek-swab kit from them and mail in your sample. After you join, you can request a copy of your HLA tissue-typing report to send to us.

If you wait, we'll be able to provide you with detailed instructions on where to test and what to send us. Of course, we can cover the cost of the lab test too. And, you can choose whether or not to join the national registry.

If you're curious about the marrow-donation process, it's advanced a lot over just the past several years. Thankfully, the majority of donations no longer require surgery. If Bertrand's Doctor were to request surgical donation, it usually involves an incision in your hip or leg under general anesthesia. Regardless of the donation method, most donors are back to work within one to seven days, feel no effects of having donated within three weeks and have fully regenerated the donated marrow within six weeks. So, mostly, you just get a week off work, and you end up saving a life in the process!

Bone Marrow Transplant: LOOKING FOR DONOR!

We need to start looking for possible bone marrow donors for Bertrand. This is on the chance that his lysosomal condition is one of those which can be treated with such a transplant. If by some miracle we have a matching donor lined-up (next to impossible) we can get the transplant in a matter of weeks.

PLEASE consider getting checked! The closest match is usually a sibling, but Bertrand doesn't have any. And, neither Matthew nor I may be an acceptable match. :'(

"Doctors look for a donor who matches their patient's tissue type, specifically their human leukocyte antigen (HLA) tissue type. HLA are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. The closer the match between the patient's HLA markers and yours, the better for the patient."
--National Marrow Donor Program

The National Marrow Donor Program has a great page on the ins and outs of HLA Matching and a list of Donor FAQs.

We'll be in touch with Bertrand's doctors this week for many things, including determining his HLA.