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Old 04-17-2012, 03:58 PM #1
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Quote:
Originally Posted by glenntaj View Post
Neuropathy is far more common than multiple sclerosis, Parkinson's, and myasthenia gravis combined. But you wouldn't know that from how often it's talked about compared to those. I do blame some of this on the neuropathy advocacy organizations--they fight with each other a lot, and a lot of the organizations for other conditions seem to cooperate more--but that can't explain it all. I keep waiting for one REALLY currently famous person to draw attention to it. I bet a lot of our older politicians suffer from it, for example. I certainly try to get the word out there, but my degree of fame seems limited to the internet and Neurotalk.
The situation is very similar with chronic pain.
http://www.painmed.org/patient/facts.html

Another way they (PN & CP) may be similar is that a good deal of the problems with awareness stem from their invisibility (as far as diseases/disabilities go) - you can't see them.

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Old 04-17-2012, 05:45 PM #2
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Do we even really know how many people are effected with PN?

We definitely need more public people to open up about this? I just can't understand why? I have seen many interviews where many of them open up about there healthy issues, but why is this not spoken about? Is it because, like you said mrsD, its silent, and therefore its not worth mentioning, it not life threatening so why talk about it. But then again so many other healthy problems run along the same path. We only need a few to open up about it, and it will encourage others to do the same.
It can only help others. I don't think most of these well knowns, understand the power they have to heal others. They have the media to manipulate and the money to push for awareness.

By the way, l did find an interview with dolores Hart talking about her experience with PN. I can try and find it again, if you would like to read it.

Also, l just wish there were some younger celebrities who would open up about it, as l am sure there are some who have PN.

Sue
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Old 04-18-2012, 06:42 AM #3
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Default There have definitely been--

--some interviews with Mother Dolores Hart where her neuropathy was discussed; a number of them were through Neuropathy Association functions, at least. I did get angry, though, when the recent spate of articles about the anniversary of the movie in which she co-starred with Elvis and gave him his first big-screen kiss did not even mention this. (Not a one that I saw.) And I was not happy that the neuropathy organizations did not jump all over that. (Apparently, I was the only one mentioning it in commentary and on forums.)

Yes, neuropathy is often a silent, "no-see-um" disease--although there are numerous people who have motor and sensory manifestations that result in things that are observable--people with tremors, with walkers or canes or in wheelchairs in severe cases, and certainly some acute neuropathies such as Guillain Barre may require hospitalization/intensive care. And yes, too many people, even in medical specialties, think of it as simply a complication of something else, like diabetes.

Judging by the response at forums like this, though, it's far from uncommon. Just underpublicized.
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Old 04-18-2012, 06:48 AM #4
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Lightbulb

And many doctors think it is "in your head".... The show Mad Men, had Betty in the first season whose doctor told her that her numb hands were psychological and sent her to a shrink.
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