Journo's last wish is for more marrow donors

Tamu sez, "Adrian Sudbury is a journalist and edits the Huddersfield Examiner website in the UK. He is 26 and has two forms of leukemia simultaneously - apparently the only recorded case. He has already received a stem cell transplant but it has failed. He has also ended his treatment and will likely die in a several weeks, so he hopes others will benefit. His last wish is for people to reconsider bone marrow registration and donation and see it taught in UK schools. Both the Examiner's and Adrian's pleas have been printed on the Examiner website. "
In Germany, sixth form students are educated on becoming a bone marrow donor, why it is important and how they can apply.

As a result, Germany has one of Europe’s highest number of donors.

Adrian believes we need a similar system in British schools and colleges. It would mean more people are informed about becoming donors as standard, lessening the burden of raising awareness for charities such as the Anthony Nolan Trust.

Link (Thanks, Tamu!)

See also: Seeking marrow donor for animation writer/blogger Emru Townsend

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  1. Seriously, this couldn’t be an easier way to possibly save someone’s life. When I registered, I walked in, filled out some basic paperwork, then swabbed my cheek. I received a letter two weeks later informing me that I had been successfully added to the registry.

    In addition to this minimal effort, it’s also a good idea to offer to pay for the test to register (if you’re able). I offered, but the blood center where I registered couldn’t find anyone to tell us the price of the test. They gave up and even though I offered to have them call me later, they never did.

    I am of asian decent. Minority groups are those with the biggest need. If you happen to be a minority, the need for donors on the registry is dire – an understatement when you’re talking about lives lost needlessly.

    Want to have a good day? Stop after picking up your morning coffee and spend 15 minutes possibly saving someone’s life in the years to come.

  2. Lots of people don’t know this apparently, but in the U.S., openly gay men are *still* prevented from donating blood or bone marrow products. (We’re still the only ones who get HIV, apparently.) I’d be glad to support the cause, if the FDA would only step into the 90s.

    A good friend of mine was surprised to find this out, so this seemed like a good crowd to remind that this discrimination is on the books.

  3. BRAD.S TURING CLUB

    I agree whole heartedly.

    All points made.

    I live just up the road from Huddersfield so shall get me hence and register.

    And remember there are no such things as minorities.

    We are all one race.

  4. Forget it in the UK if over 50 though. I expect there is a good reason that the limits for donation are 18-49.

  5. I would do, but the bone marrow registry is run by the national blood service, so I expect that they use the same criteria as for blood donation which are prejudiced against homosexuals.

  6. #2: The Marrow registry in the US technically operates under those rules. However, in practice it’s more of a “don’t ask don’t tell” sort of thing, and didn’t appear on the questionaire when I was entered into the registry.

    The need for donors is extremely urgent. If you get called up for a donation, and test HIV-negative, they’re not going to take away some poor person’s last chance at life just because you’re gay.

  7. I registered as a donor through the DoD donor program about five years ago and promptly forgot about it. About a year later I got a call informing me that I was a likely match for a leukemia patient. The donation procedure was simple and in my opinion the reputation for the marrow extraction being painful is overblown. I opted for a general anesthetic vice an epidural and while I was very sore and still afterward it was far from the most painful experiences I’ve had and they give you plenty of Vicodin if you feel like you need it. They took 39 ounces of marrow (who knew that your pelvis held that much!) from my pelvis out of 75 needle punctures through the back of the pelvic bone. Marrow from a healthy person regenerates in a matter of a few weeks and you have more than enough in your femurs and sternum to get you by even if your pelvic marrow is completely drained. I donated in 2006 and I’ve had no ill effects from the process.

  8. OK, I would just like to mention as a person who supports gay rights, and is against the organ and tissue donation bans on gay male donors before it became a personal issue, that YES there is a ban, but donation is still a cause worth supporting.

    Don’t blame the registries for this ban. In many cases, it is imposed by the governments of the countries in which they operate. Canada’s began just this year, and it was imposed by Health Canada, NOT Canada Blood Services or Hema Quebec. The US began their ban in 1994. Similar story: it is the FDA’s imposition, not the National Marrow Donor Program’s.

    Before you point fingers, make sure you identify the right person to point them at.

    However, to not support the cause of donation would be a mistake.

    While it is discriminatory, if you are homosexual and need a transplant, guess what? You can still receive a transplant if you match someone. 70% of people who are going to need a stem cell transplant are going to need someone outside of their family. So to not tell others about the registry in protest means less people know, less people register, and everybody loses.

    I fight this by writing to Health Canada, my MP, and the Prime Minister. I asked my friends, gay and straight, to do the same. Then I asked them all to get back to helping me get more registrants.

  9. Fee, some countries limit registration at 45 (UK) or 50 (Canada), but all volunteers are active until the age of 60, unless they chose to have their names removed from the list.

    There is a correlation between higher success and lower ages for donors.

  10. Error404: You’re right there is only one race, and I wrote the more than one registry recently on the use of the word race in their material.

    However, there are minorities. As much as I loathe term in its popular usage as it applies to people in their daily lives.

    In this context, there are minority genetic donor pools. On the registry there are people of different ethnicities that are underrepresented, and the lack of people in that ethnic pool put patient of that background in serious jeopardy.

    Due to inheritance, the likely donor will be someone of a same or similar ethnic background, and the more people who are of that background the higher the chance of finding a match. This is not based on how you look, but who your mother and father are, and their mothers and fathers, and so on. If certain populations tend to stick together, there is a less genetic variance, increasing the chance of finding a match.

    Minority in this case does correlate to its popular usage, unless you are Japanese, the people with the most homogeneous donor pool. But a minority pool can also mean someone of European extraction, that has a rare tissue typing, such as Ashkenazi Jews, or some who is a Dutch/Spanish or Swedish/Polish mix.

    This is not to say that a person’s match might not come from someone who is a different ethnicity or background. It is highly unlikely but quite possible, exactly for the reason you mention. We are not different races but variations on a theme.

  11. If you are in the United State and you would like to contribute money or become a Bone Marrow Donor Volunteer, visit the Marrow Foundation Donor Garden: http://www.donorgarden.org

    One of the major challlanges to the National Marrow Donor Program in the US is a lack of funding; all but two weeks a year (the annual Thanks Mom campaign), there are significant fees attached to becoming a donor volunteer (upwards of $50, unless you are in certain categories considered urgently needed).

    70% of Marrow donation procedures involve a non-surgical method of extracting Marrow, called the PBSC method. 30% of the time it is a surgical procedure, but it is not the super-invasive ‘corkscrew in the spine’ that many people believe it to be.

    I encourage every person between 18 and 60 to contact the NMDP and become a donor volunteer: the odds of being a non-relative genetic match bottom out at 1 in 20,000, making every new donor a sick person’s potential winning lottery ticket!!

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