[januarybabe]

I was reading a beauty shop magazine and read an article about a movie actor Delores Hart who became a nun. She starred with Elvis in a film. The article says that she has PN. I looked it up and found this online article"

http://www.newstimes.com/news/articl...ess-233923.php

[mrsD]

Thank you for posting this.

Chapter 7 of Dr. Latov's PN book Peripheral Neuropathy, has biographies of some patients (some famous).
Mother Delores Hart is the first one that appears in that chapter.

[glenntaj]

--has used Mother Delores Hart as a celebrity spokesperson for the condition for a a very long time; she gets trotted out at most of the big neuropathy summits and sent to Capitol Hill on lobbying occasions.

Not to put any onus on Ms. Hart, who is nice enough, but I have criticized the Association on several occasions (including on these boards) for not making more efforts to recruit other celebrity spokespeople with the condition who, frankly, have more fame and would bring more attention to the condition than Ms. Hart. I have made analogies to the situations regarding celebrity attention and other neurologic conditions, and about how Michael J. Fox "coming out" as a Parkinson's sufferer, or how Annette Funicello, Teri Garr, Montel Williams, Jonathan Katz, and others talking about their multiple sclerosis, have focused attention on these disorders and helped with funding for research into causes and treatments.

Neuropathy has more sufferers, by far, than MS, Parkinson's, and MG combined, and yet one would never know it, with its much lower public profile. Remove diabetes from the list of causes and it seems no one who doesn't have it is aware of ANY of the other types (of which there are many, as we know). And yet, there are many celebrities out there with neuropathy who have for one reason of another have not chosen to be anywhere near as public and advocative as I feel they should. Mary Tyler Moore has concentrated on diabetes. Johnny Cash only mentioned his autonomic neuropathy in passing. Andy Griffith has almost never talked about his experience with Guillain Barre. And Glenn Beck has only mentioned his situation rarely. (He seems to have some form of small-fiber neuropathy, currently idiopathic. As much as it pained me, I actually wrote to him about the issue, but did not get a response--but hey, I'm a well-known local liberal/progressive.)

In sum, someone with a high profile going very public with his/her neuropathy, and speaking about it, would only be helpful. People would know they're not alone with the symptoms and the often mysterious search for a cause. And these people have to be out there; neuropathy is COMMON. (I wonder, for example, how many of our Representatives and/or Senators have it--I bet there are quite a few. I've suggested the Association poll Congress. That suggestion hasn't gone very far.)

[mrsD]

I totally agree Glenn.

But you know I think we on this board (and the previous one) have made PN far more visible, at least on the net.

DocJohn's efforts to make our board pleasant and safe and supportive have been generous and fantastic IMO. He has somehow made searches on Google very easy to link to here.
So we get many readers as a result. I see many register while I am moderating. Not all ask questions, but we are one of the more busy boards here overall.

I think your efforts like the rest of us who have been here and who decide to come daily here to share, speak volumes in a slightly different way. It may be a more quiet result, but we all have as a team created a place where information and support, and some relief may be found.
We may not be on TV etc, but we all do accomplish something real!

[Rosie33]

Originally Posted by glenntaj

--has used Mother Delores Hart as a celebrity spokesperson for the condition for a a very long time; she gets trotted out at most of the big neuropathy summits and sent to Capitol Hill on lobbying occasions.

Not to put any onus on Ms. Hart, who is nice enough, but I have criticized the Association on several occasions (including on these boards) for not making more efforts to recruit other celebrity spokespeople with the condition who, frankly, have more fame and would bring more attention to the condition than Ms. Hart. I have made analogies to the situations regarding celebrity attention and other neurologic conditions, and about how Michael J. Fox "coming out" as a Parkinson's sufferer, or how Annette Funicello, Teri Garr, Montel Williams, Jonathan Katz, and others talking about their multiple sclerosis, have focused attention on these disorders and helped with funding for research into causes and treatments.

Neuropathy has more sufferers, by far, than MS, Parkinson's, and MG combined, and yet one would never know it, with its much lower public profile. Remove diabetes from the list of causes and it seems no one who doesn't have it is aware of ANY of the other types (of which there are many, as we know). And yet, there are many celebrities out there with neuropathy who have for one reason of another have not chosen to be anywhere near as public and advocative as I feel they should. Mary Tyler Moore has concentrated on diabetes. Johnny Cash only mentioned his autonomic neuropathy in passing. Andy Griffith has almost never talked about his experience with Guillain Barre. And Glenn Beck has only mentioned his situation rarely. (He seems to have some form of small-fiber neuropathy, currently idiopathic. As much as it pained me, I actually wrote to him about the issue, but did not get a response--but hey, I'm a well-known local liberal/progressive.)

In sum, someone with a high profile going very public with his/her neuropathy, and speaking about it, would only be helpful. People would know they're not alone with the symptoms and the often mysterious search for a cause. And these people have to be out there; neuropathy is COMMON. (I wonder, for example, how many of our Representatives and/or Senators have it--I bet there are quite a few. I've suggested the Association poll Congress. That suggestion hasn't gone very far.)

My thoughts on the "Idiopathic" side of neuropathy are that it could be caused by a lifetime of alcohol consumption, and maybe that's why our so-called beautiful people don't want to come forward and admit they have or had this problem......just sayin'...

[mrsD]

From my experience in the health care field... I think that most PNs today, in younger people are vaccine/viral induced or drug induced.

I remember when the only patients I saw were old who had PN. So in the minds of many PN is an old person's disease. It accompanied diabetes which is now much more common too. Now it is everywhere. As our environment gets more and more toxic, so will the numbers of people increase with PN. The peripheral nerves are very fragile and often the first to react to toxic and infectious assault. I also think alcohol is very over stated. There are many people who were severe alcoholics who never had PN. The ones that are nutritionally compromised are the ones most likely to develop it.

When a disease like MS or PD strikes a young person...that is when people pay attention IMO. MJ Fox was very young when his PD started for example. So was Annette Funicello when she developed MS. Andy Griffiths however was much older, so we don't hear about him, except from within the PN community.
We don't pay much attention to old people in our culture...I am finding that out the hard painful way myself!