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Currently, My Biggest Fear

By Ben B.

May 20, 2014

or: Fun With DNA!

One of the long-term writing projects I had given myself in the past few years was to write a book on a lifetime of experience with HIV, less about my own story and more a commentary on being a child in the early AIDS era and how it impacted me as I grew older and HIV/AIDS grew downplayed into merely a "condition."

Thing is, I was going to call the oeuvre "Catch-32." As in: CCR5-Delta32. As in: up until my December diagnosis, I believed I possessed the "CCR5-Delta32" gene for "plague immunity."

Obviously, I don't.

But actually ... it's more complicated than that.

Broadly, 10% of Caucasians possess this gene. Initial thinking was that Delta32 originated out of a small NW European village that survived the waves of the Black Death during the late Middle Ages. More recent findings suggest, however, that it may have been waves of broader small pox plagues dating back millennia.

Scandinavian populations can have as high a concentration of Delta32 as 16%. The further south you head, the less common this gene is (6% in Italy, 4% in Greece). That the highest frequency of this allele (meaning: genetic variation) occurs around the Baltic Sea basin would suggest the Vikings were the main dispersers of CCR5-Delta32 throughout Europe. Ashkenazi (but not Sephardi) Jews also test rather high for the Delta32 gene, however it's believed to be a conveyed "founder effect," due to the genetic bottlenecking of centuries spent in "ghettos."

Delta32 distribution chart

In retrospect, telling myself I had this gene was not a very fun or safe game I was playing. I assumed I would know if I was ever proven wrong here, either by blood test or that terrible sickness that's supposed to pre-date diagnosis. I never truly experienced the latter, and when I start to match dates up, the former starts to look questionable.

Between my mother and my father, I definitely fit into this Viking/Ashkenazi profile, which allowed me to continue disconnecting myself from reality.

Here's what I've learned since:

In order to be immune to "plague" (yes, including HIV), you need TWO copies of Delta32; BOTH of your parents need to be descended from these Medieval populations.

Due to facts on the ground, I no longer believe I possess 2 copies of Delta-32. Where it gets tricky is if you have only one.

This conveys "Resistance." The problem I'm having, in 2014, is that no doctor seems to know what that means, exactly.

Does one copy of Delta32 mean it's far more difficult for you to become infected ... OR you just incubate HIV at an insanely slow rate?

The insane neurosis I struggle with now: what if I got infected years and years, if not decades, ago? What if it had just been hiding out in my body since then, undetected? What if I unknowingly infected others?

I mentioned in a previous post (on HIV Social Etiquette & such) that it's incredibly invasive to follow-up an HIV "de-closeting" with a "how did it happen?" as many afflicted will never know their exact origin story.

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As of right now? That's me.

It's looking like I need to get my DNA sequenced, which has always been a crazy nerd interest of mine, only now: this is about peace of mind and how I progress on this new course I'm on. If I DO NOT possess one copy, then I concretely know the how/when/where of my infection.

Am I playing a new variant of the same histrionic game? Might sound that way, but: I grew to have a sense that there was something wrong with me last year. And I don't just mean skin or health ailments -- I had anger that threatened to consume me at times.

I've always been sensitive, but I questioned myself over where this anger/discord was coming from. It just didn't seem right. Hindsight being 20/20, I get to thinking there's a connection between this influx of anger and the spreading of HIV throughout my body.

That I'm *much* happier now, post-diagnosis and just having started Month 3 of my meds would seem to suggest that HIV and mood are, as I suspect, related (both are affected by gut health, for example). OR, to play Devil's Advocate for a moment: my mood is infused by the "Spiritual Teflon" I've also mentioned prior (associated with, but not the same as: Survivor's Guilt).

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I'm not even sure mainstream DNA-testers "23andme" will look for Delta32 anymore. As of last December, the month of my diagnosis, the FDA (grrrrrr) has banned this company from revealing genes that would indicate certain health factors.

Different generation, same disease, different issue, but: FDA, you really piss me off.

Where can I go to confirm or deny my one copy of CCR5-Delta32?

Anyone? Bueller? Bueller?

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