Huntington Disease Lighthouse Families

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When is diagnosis official?

Posted by Lauryn 
When is diagnosis official?
May 27, 2012 09:24PM
Hi everyone,

I'm sorry for all the questions...I know I seem clueless when it comes to the disease but only recently have I started doing serious research on it and I've got a lot of questions.

My question this time is what is the difference between having HD and being officially diagnosed? Does that make sense? When is a person officially "diagnosed" with the disease? Because from my understand, a person is either born with HD (a higher CAG count) or they're not. So when does the official diagnosis come into play?

I hope this question makes sense. Thanks for answering.

Take care and best to all.

~L.
Re: When is diagnosis official?
May 27, 2012 09:38PM
I'm not sure, but I think people may mean that a person is "diagnosed," symptoms are present. A person may take the test and get a positive result, but that doesn't mean that he or she is showing symptoms.
Re: When is diagnosis official?
May 28, 2012 07:33AM
A person in the grey range, between 37 to 39 count, may or may not develope the disease. So the disease is diagnosed as such at the point that symptoms become present and are diagnosed by a professional. Having a count of 40 and above means that the individual will at some point, if they live long enough, develop the disease but will not be considered as having the disease until officially diagnosed by a professional.
The consequence of getting a genetic count done can be a real problem in relation to insurance companies especially with reguard to family history. They weigh the potenital cost of care against the preminiums they receive which are available to distribute. If the family history threatens their cost bases they could feel justifed in denying coverage.
We who live with PHDs know that something called soft signs, unusual thought patterns, behaviors and twitches show before a professional diagnose and these could or could not be HD. However it takes a professional to actually confirm diagnose and that is what insurance companies go by.
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