Monday, June 1, 2009
Bone Marrow Donation
As I am sure most of you out there in the CJD community know, blood relatives of CJD sufferers are prohibited from donating blood or organs, even if it is not a genetic form of the disease. While I know (and respect) that this is done in an abundance of caution, it still bothers me that I am prohibited from helping others because of a disease I will most likely never get. If you feel this way too, I would encourage you to look into joining the bone marrow donor registry. At this time, there is no prohibition donating bone marrow. You can visit the National Marrow Donor Program website for more information.
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I first noticed this comment on Dr. Appleby's site some time ago. While I understand your frustration, there are very few good preventative measures in place today and what we know today about prion disease will surely change as our understanding of the pathophysiology improves. In the meantime, I choose not to circumvent the fragmented system that is in place so as not to add to today's confusion. My father died of sCJD in 2005. Mayo Clinic sited neurosurgery as his risk factor. He tested negative for a genetic marker at the NPDPSC. All of my family members provided hands on care including suctioning. Maintaining standard precautions was very difficult in the home setting. My brother and I had strong reason to believe he was leaking CSF. We were unable to substantiate this finding because the attending neurologist refused to perform the simple, inexpensive glucose test. This office visit was made exclusively for this reason. He died a short time thereafter. While CSF does not carry a strong transmission risk, it does pose risk. Health care occupations have been linked to higher risk even if not statistically significant. Maybe our exposures were significant, maybe not. Maybe we have yet to uncover all genetic markers. It is for these important reasons that I do support the current blood, organ, and tissue deferral recommendations in place. Bone marrow is tissue. Meat and bone meal restrictions are important in the prevention of prion disease in cattle and other species. Human to human transmission poses great risk once the species barrier is crossed. My father was a desirable blood donor for decades...not included in the Lookback Study... and not because we didn't enroll him. Do I think my deferral and that of my children is ridiculous and over cautious? I would prefer the error be one of caution. That is just my take.
ReplyDeleteI feel the exact same way. I was in 3rd grade when my Grandfather died of CJD and a Freshman in High School when I found out I couldn't donate blood. I have been trying to find ways to make a difference in someone's life. I've donated hair, but that doesn't seem like enough. Now that I am in college, I've been looking into bone marrow donation, which brought me to your blog. It is nice to know there is someone else out there with the same issues and feelings I have had for 10 years now.
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