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----- Original Message -----
From: Phillip J. Hardt <phardt1@home.com>
To: Huntington's Disease Discussion <HUNT-DIS@MAELSTROM.STJOHNS.EDU>
Sent: Wednesday, February 02, 2000 9:48 AM
Subject: Re: Re: Cag

[Paragraphs added for clarity.]

Now, the rest of the story.....I hear what everyone is saying, but I think
if we classified "Age of Onset" as the time one started showing "physical"
signs, then we'd be closer to the table shown in www.genetest.com/hd.htm  .
I think psychological/mental/cognitive/emotional/etc. signs are rarely
detected, or attributed to the "Age of Onset" because they start out so
subtle and are so hard to detect. Since I believe that no test currently
being used tries to ascertain whether-or-not you've become "symptomatic"
based on any evidence but primarily "physical" symptoms, I believe that the
numbers published are only "relative" to say the least, and are skewed
higher than reality because of this bias.

In other words, you may start symptoms many years before the published numbers say, and those symptoms will more than likely be psychological/mental/cognitive/emotional, etc.  However, I believe that there are some valid explanations for the "Age of Onset" being physically-symptomatic biased: 1) In the US HD is handled primarily by neurologist, not phychitrists [sic], hence an automatic bias towards physical symptoms in all testing that's been performed or is currently being performed.; and 2) The person with HD may not even be able to recognize that what's been happening to them, other than obvious physical symptoms, is HD-related, or by the time they do, may not be able to express themselves so possible detection may be almost impossible. Regardless, I think there's a lot of misinformation out there that makes planning (financially, family, etc) very hard because if you start the other "softer" symptoms first, and years earlier than published numbers, you may have already unknowingly, lost your job and insurance and marriage, and friends due to HD-related complications, and then how can you "plan" effectively?

I would feel more warm and fuzzy if all of the tables, charts, etc. added
"based primarily on physical symptoms" to each heading of "Median Age at
Onset" that's currently being used. Tired of my venting? Call
1-800-ENOUGH! Have a great day.....Phil
 


Phil Hardt     phardt1@cox.net    602-309-3118
 

 
 
         
   

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