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Comments made by AuntJenny

Huntington's Disease

Okay, I'm pretty much done here, but I'm gonna say one last thing: HopeDignity, I don't feel "pity" for you or anyone else, and I really, REALLY resent your twisting my genuine compassion into something derisive. Not only do I not pity you, but I'll admit that you're irking the living hell out of me right now. (How's THAT for not pitying you?)

But that's beside my ONE point, which was about reproductive responsibility, and which point has gotten lost in a big mess of illness/end-of-life/pity/compassion/I'm-Hitler-and-Mengele-combined mess.

I don't know you; you don't know me. While I give you wide berth, you make frankly RUDE assumptions about my "attitude" toward people with HD, certain that my take is based solely on end-of-life situations. NOT SO. There are two different trains of thought happening here: 1) living with HD; and 2) doing everything possible to eradicate it. I make no judgments about the former (how could one possibly?), but am INCREDIBLY judgmental about the latter.


I worked in a nursing home and cared for many people in many stages of life/death/illness, and felt compassion for all and pity for NONE OF THEM. I believe the care I gave and dignity I afforded to my patients was EXEMPLARY, and my patients and supervisors agreed. I also knew the families of late-stage HD patients. These were people who themselves had/have HD-- some symptom-free, others experiencing some early onset.. You completely skipped over my mention of that some posts back. Yeah, I know from the yet-un-afflicted family.

Some years later, I went on to be a home-care nurse to a woman with fairly humiliating disabilities (bedridden, colostomy, etc., etc.), and managed to keep her "topside." Not easy; she was a bitch, actually (and I told her so once when she'd pushed me too far... and she laughed out loud and told me I was right)... but that's sometimes part of the job description, no?

Here's a template I think you and I can BOTH agree upon:
NO pity.
ALL compassion.
NO ignorant procreation.
MASSIVE research funding.

My "attitude" isn't about a reaction to late-stage HD, it's about PREVENTING A HORRIBLE DISEASE.

And that is/was my only point.

May 23, 2010 at 2:50 a.m. ( | suggest removal )

Huntington's Disease

HopeDignity, I understand (but, again, can't possibly KNOW) your pain/anxiety/anger/any number of feelings involved in living with HD.

Hostility toward me isn't going to help a thing. I originally posted because there was an obvious gap in the discussion of HD; it's the equivalent of talking about AIDS and not mentioning condoms.

Of course I'm not Jonas Salk. I'm nobody. I just raised my hand and stated what SHOULD have been stated in the original conversation.

You read much, much, MUCH too much into my simple premise, and (if your last post is representative) hang on me a whole lot of baggage that has nothing to do with the subject at hand.

-- YES, research into treatments/cures is crucial and must be supported;

-- YES, compassion and care and non-discrimination are crucial;

-- YES, getting tested before procreating biologically is IMPERATIVE.

I know the human factor; I lost more than a dozen friends to AIDS in the '80s. There was a time when we didn't know what caused what, and what preventative measures we could take. This is no longer the case with either AIDS or HD.

I'm not a scientist, I'm not a researcher, I'm not a doctor. But I know enough to bring up THE MISSING POINT in the "These Days" discussion of HD. And I've done enough reading to know that prevention is much more effective than any "cure." We didn't "cure" polio; we PREVENTED it. We can't even "cure" the common cold, for pity's sake. Any scientist/researcher/doctor will tell you the best way to deal with a disease is to stop it before it starts.

All I promote is responsibility and ethical behavior. That doesn't exclude the human factor, or compassion, or advocacy for human beings dealing with the fact of HD (or AIDS, or Alzheimer's, etc.) in their lives. I wept with happiness when the antiretroviral drug therapies were finally available to AIDS patients; I have friends alive and thriving today who were teetering on the edge at the time. I understand the importance of "treatment," believe me.

I wish you a long, healthy, happy life.

May 21, 2010 at 2:49 p.m. ( | suggest removal )

Huntington's Disease

starboy, I don't disagree with ANY of your points (except for the accusation of my "hostile" tone-- really? I thought I was rather restrained), and I would go so far as to say that they line up pretty well with my admonishment of testing-before-procreating.

Again, I really think we're on the same side.

I don't think any treatment plan/philosophy is misguided, by any means; I'm sure you'd be surprised (but I hope pleased) that I'm a financial contributor to HDSA..

May 21, 2010 at 4:06 a.m. ( | suggest removal )

Huntington's Disease

Thank you, HopeDignity.

Yes, there absolutely should be more effort put into research for treatments for HD, no question. People who have HD shouldn't be ostracized or discriminated against or viewed as "less than" anyone else walking the planet. Medical bigotry is abominable, and I loathe it deeply.

I can't possibly know what your experience is, but I can almost understand, around the edges, having seen it (I've known the symptom-free children of late-stage HD patients, too). I know that you know things I can't begin to comprehend, and there are insights and revelations you have gained that the "un-afflicted" cannot ever grasp. I truly DO get that.

But I refuse to glamorize a deadly illness. What one gains in adversity may be a gift, but I defy ANYONE to call HD itself a "gift," one that should be lovingly passed down to future generations because of all the spiritual "insights" it affords its sufferers.

My ONLY point is that this is a horrible disease (I don't think this is a particularly controversial view), and it CAN be eradicated. To have the power to make it "go away," and to NOT exercise that power, is the very definition of irresponsibility. This is a conversation very different from how we, as a society, treat the ill-- medically, socially, ethically, etc.

I ask you: Would you not like to eradicate Huntington's?

I'm not a bigot or a eugenicist or a hater; I'm a pragmatist. Am I proposing a war on the "differently-abled"? No. I'm only about taking simple steps to make a hideous disease DISAPPEAR. How does that make me insensitive or a bigoted eugenicist? Did creating the Polio vaccine make Jonas Salk a bigot against Polio sufferers?

The people who are here ARE HERE, and they/we deserve every right and consideration and kindness and support society can offer, no matter what our conditions, medical or otherwise.

Again, my ONLY point: There is a very, VERY simple way to wipe out Huntington's in two short generations, and to not do everything in our (collective) power to do so is irresponsible and selfish beyond comprehension.

Neither you nor starboy has addressed my actual thesis; I understand the defensiveness and assumptions, but to not acknowledge that what I'm really talking about is wiping out this disease?

Guys, I'm totally on your side.

May 20, 2010 at 1:33 p.m. ( | suggest removal )

Huntington's Disease

I'm sorry that I was misunderstood. Please let me clarify and address the completely valid points both StarBoy and HopeDignity raise.

StarBoy, I don't blame anyone for ANY decision made based on lack of information (either back in the day or in present day), and I know that the test is expensive. However, $1,000 is pretty cheap if one is contemplating having a child, don't you agree? Raising a kid costs a whole lot more, and that initial investment in knowing whether you are perpetuating a horrible legacy makes it seem pretty cheap in comparison. I stand by my point.

HopeDignity, your "life decisions" are entirely your own and none of my damn business; it's when procreation of the disease enters the picture that I get "exercised." I don't think anyone should be tested unless s/he wants to be WITH THE HUGE EXCEPTION (yeah, I'm shouting, StarBoy) of possibly passing along the disease.

Did either of you actually read my original post?

To both of you (and anyone else): I come from a medical family; half my relatives are doctors/nurses/lab techs, and I have been a health-care worker (yes, taking care of HD sufferers as well as others in long-term care facilities), so I know from the agony experienced by patients and their loved/loving ones. I've changed their diapers; I've fed them pureed meals; I've hugged their children when they could no longer recognize those children. I've watched them die in pain LONG before their time.

I am NOT a eugenicist by any means. I simply and rationally conclude that it is incumbent upon all of us to use whatever power that lies in our hands to improve the world, and this one is a no-brainer: People who KNOW they are at risk for HD should not have biological children until they are tested. PERIOD.

I don't see how forwarding this completely rational and compassionate stand makes me the equivalent of Hitler.

May 19, 2010 at 8:54 p.m. ( | suggest removal )

Huntington's Disease

Something NO ONE on this panel mentioned is that, since the advent of the test for Huntington's, it is possible to COMPLETELY ERADICATE this horrible disease in just two generations: Those who are children of Huntington's sufferers get tested and, if positive, DO NOT HAVE BIOLOGICAL CHILDREN OF THEIR OWN.

I know that many who are at risk of Huntington's choose NOT to get tested, and that's their perfectly understandable decision; but it is absolutely unconscionable for them to not get tested and then go ahead and procreate, not knowing if they're passing on a legacy of avoidable suffering.

May 18, 2010 at 11:19 a.m. ( | suggest removal )