National Marrow Donor Program

The National Marrow Donor Program is still making it needlessly difficult for people to donate their bone marrow to those in need.
Since I wrote my original review, I was again contacted by NMDP because I was a potential match with someone who needed a marrow transplant. Once again, I was both nervous and exhilarated about the prospect of undergoing surgery. This time, however, I was way more excited, because my recent experience of being in the hospital motivated me to do anything I could to ensure that someone else didn’t have to spend more time laid up than he or she absolutely needed to.
So I called and spoke with a doctor, and you know what? I was excluded as a potential donor because of preexisting condition called Familial Mediterranean Fever (FMF). I spoke with the screening doctor at length about this, and I informed him that I wasn’t even sure I had the disease (the only way to definitively diagnose it is with a DNA test) and that my symptoms had really died down to the point that I didn’t really even think about it much anymore. Let me be clear: FMF is not contagious. It’s a genetic disease of the abdomen that isn’t even fully understood. It can cause debilitating pain, but in my case, I can control the pain when flareups occur, and they occur pretty rarely. It has nothing to do with the skeletal system, and it has in no way affected my bones or my bone marrow.
I explained all of this to the doctor, but he said that the diagnosis would exclude me from being a donor this time and in the future. When I asked why, he told me that they didn’t want me to undergo suffering just to give bone marrow to a complete stranger. Huh? Isn’t that kind of the point of medical donation? You undergo discomfort and, yes, pain to donate blood or to be tested for other matches with complete strangers. I told the doctor that I was fine with the pain and that I would sign any pain-​and-​suffering waiver if it were a legal consideration only, but he just told me they were taking my name off the list.
NMDP needs to get its act together.

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Update: We did get a letter from the donor program informing us that the patient had passed away. Although we never knew his/​her name, we will always wonder if he/​she is related to my husband in some way. We haven’t asked for specifics; if the family/​patient had wanted to, they probably could have let it be known.
It is a very good program, and my husband personally had no financial or health repercussions from it. (Your situation may vary)

Not many things in life are as easy as pie and have the potential to safe a life.
Registering with the National Marrow has the potential to save a life, and takes no longer than thirty seconds. I can’t even eat a slice of cherry pie in under thirty seconds!
I decided to look up bone marrow donation somewhat on a whim, after reading ‘The Emperor of All Maladies’ which is a fantastic biography of cancer in which the principal patient has Acute lymphoblastic leukemia. The portrait of this particular cancer that the doctor/​author portrays is downright chilling. After filling out information online, a cheek swabbing kit was promptly sent, along with some other information and brochures. I swabbed and sent, it’s as easy as 1−2−3−4 (there are four cheek swabs.)
I’ve received all three of my ‘welcome e-​mails’ that detail different aspects of the process and provide some warmth and optimism, without being overbearing. I may be called in six days, six months, six years, or perhaps never, but am I ever glad that I am there in case anyone needs me.
If you haven’t checked out the Registry’s website, please do! There are videos and more much more information about the process and how you can help.

Please consider becoming a donor, especially if you are of mixed race or a minority.

22 years ago when my father was diagnosed with leukemia, his only option for treatment was participating in clinical trials and being a guinea pig for experimental drugs.
When the National Marrow Donor Program began in 1987, there were no family matches nor enough donors in the database to provide him with the possibility of having a marrow transplant. Twenty years (as well as my father) have passed since then, and there are still several thousand people each day searching this database for a possible life-​saving match.
Twenty years have passed and there is still very little awareness of how easily we can all potentially save the life of someone close to us or that of a complete stranger.
A few years back when I was at the Gilroy Garlic Festival, I participated in a donor drive which cost me nothing, provided shade from the blazing sun, treated my to cookies and juice, and pained me only for a second while they took a small blood sample. This past year, I was notified that I might be a potential match for someone in need of bone marrow. What took only 30 minutes out of my day could be the first step toward helping another human being live out the rest of his or her life.
Disease strikes when you least expect it, even if you live healthily. At the age of 45, with three children and a house that was still being paid for, never having smoked a cigarette in his life, exercising regularly and leading a completely «dry» life, my dad was told he had six months to live. That is not nearly enough time to rally all your friends together to find a marrow match, yet thousands of people are given the same death sentence by their physicians regularly.
Lots of very generous people plan to do their part once they are dead by donating their organs. Wouldn’t it be great to save someone else’s life while still retaining your own? :)
Within the next month, there are 17 donor drives within 100 miles of San Francisco and 31 donor drives within 100 miles of New York. Please take a moment to visit this link where you can find donor drives in your area by providing your zip code:
If you have any questions about joining the National Marrow Donor Registry, please click here:
Since 1987, the National Marrow Donor Program has helped more than 25,000 people receive bone marrow or cord blood transplants. Please consider giving them your support!

If you’ve ever considered being a bone marrow donor, go to the website for more information on sites in your area. I know I’m a healthcare nerd, but if everyone on Unilocal got their blood drawn, a small group of us might be a match. If those who matched wound up donating, a few lives would be saved.