Are the numbers correct?
 

Is it true that 20 million people in the US have NP? I read that's 1 in 15 people. Does that sound right? If so, how come we never hear of any people in the public eye who suffer from NP?

Sue:)

PN is very common.

In the old days it was considered a typical part of aging. This is why doctors are not keen on investigating it unless the patient insists.

There are some famous people with it, they just don't tend to talk about it. Many neuropathies are secondary... caused by something else, like diabetes.

The more dramatic fast moving types, like GBS often do get attention.
Dr. Latov's book, has some bios in it, Andy Griffith, Mother Delores Hart, for example. Peripheral Neuropathy, When the Numbness, Weakness and Pain Won't Stop.

PN is becoming even more common now....and I believe that statins (common drugs) and vaccines are the culprits. Since diabetes is becoming a scourge, incidence of PN from it is increasing as well.

Nerves are very sensitive and affected by many things, and our environment is filled with toxins, drugs, vaccines, and other things to disrupt them.

Are you saying because NP is a secondary condition, that most focus on the primary condition. Just trying to understand why famouse people don,t talk about it, to bring more awareness and therefor more funding for research?

Glad to hear its common, it makes me feel bette that l am not alone.

Thanks again for all your help.

Sue

Shezin, if you pull up posts under my name--
 

--you'll find that I've ranted about this on this board (and off this board, if you want to Google me), many, MANY times.

It's a constant source of frustration for me that the advocacy organizations out there do not encourage more people to come forward. I'm sure some have their reasons--in the preforming arts, for example, I've heard rumblings about lack of insurability and being turned down for roles--but that still hasn't stopped some famous people with other conditions (Michael J. Fox for Parkinson's, Terri Garr/Montel Williams/Annette Funicello for multiple sclerosis) from talking about their situations.

Recently, Jerry Mathers of Leave It to Beaver fame has been making the rounds talking about his diabetic neuropathy, although I think his emphasis on having "cured" it (actually, I think he has minimized/arrested it with good diet and blood sugar control) is worrisome. I think we need a lot more people talking about this though. It is true that many people think of it as secondary to another condition--Mary Tyler Moore talks about diabetes, but not about her neuropathy.

None of the recent articles about Mother Dolores Hart--the Elvis movie co-star turned nun--even MENTIONED her neuropathy. We who are active in the community know about it, but it needs more widespread dissemination.

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. :o

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.

Doc

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

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.

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.