I was not sure whether to post this here or on a new thread, but PN awareness is a huge issue, and funny, I didn't know their color was purple, but in an email to a friend....I said, purple would be a good color....it reminds me of a synapse.

Anyway, as Glenn said, PN is secondary to other diseases, with a few exceptions.

Hereditary PN, and CIDP are what I construe, to be primary PNs, among a few others.

Hereditary PN is also called Charcot Marie Tooth Disease in many cases. Most cases of hereditary PN, can be cross indexed to CMT. CMT has quite a few gene loci identified, but they admit, they do not have them all, and Wayne State University is trying to get a data base. This testing is not cheap, however, the lab, Athena, does have a program for those for whom insurance does not cover. You may come up negative on ALL current KNOWN gene mutations and still have CMT otherwise called Hereditary PN, or you can remain an unidentifed hereditary PNer....a UHPNer.

HNPP is also included in this group of diseases, and I learned a lot from reading this weblink, so I really recommend it. HNPP can also coexist with other hereditary neuropathies or (CMTs). I never thought much about this being my problem because I have pain and I thought HNPP was painless, well, it can be painless numbness, but it can be associated with other painful conditions. I am rethinking this possibility.

The criteria for what is a CMT is, is changing and more recently axonal variants were added, AND autonomic types have been added, gene loci have not been found for some of them yet. I used to think you had to have a lot of muscle wasting, and that too, is no longer a prerequisite.

These are all primary PN.

If you have an idiopathic diagnosis, keep in mind that 42% is hereditary. Not all hereditary PN is obvious in any given family. It can go unnoticed until some one gets a really bad case.

Please read the link below.

http://www.hnpp.org/varieties.htm

Also, please visit the CMT website

http://www.charcot-marie-tooth.org/a...t/overview.php


Below is a more comprehensive explanation of the genetics of CMT, which your doc may actually be calling 'idiopathic' or hereditary PN. Charcot Marie Tooth, does suffer from the 'who named that?' kind of syndrome. Tooth, to most people means something you chew with....not the name of the guy who discovered this disease.

http://ghr.nlm.nih.gov/condition=cha...ietoothdisease

Again, there is a naming difference, some docs prefer to refer to the disease as a hereditary neuropathy, especially if your disease does not fit into the known gene loci for CMT. However, that does not mean, that you can not be cross diagnosed as CMT. CMT has not been exclusive of hereditary neuropathy, because they understand that many doctors do not run across the disease and may fail to diagnose it.

PN, needs to be described as primary. The current names for primary are 'idiopathic' or else CIDP or one of the other known mono or polyneuroapthies that are identifiable. Those 25 to 30% of cases called Idiopathic, 42 % could be CMTs. To put that statistic another way, 12 to 15% of PN is Hereditary, that is more than one in ten cases.

Unless you have access to a neurologist who is really very up to date, and knowledgeable about hereditary neuropathy or CMT, you will be left with Idiopathic Neuropathy.

Keep in mind, if you do not fit into the current categories of CMT, you can still have a Hereditary Neuropathy, and eventually it may or may not become part of the CMT family.

ALL PNs, whether primary or secondary, and that is how it should be described, have commonalities, but as Glenn said, secondary PNs have the disease which causes them take center stage, and with the primary PNs, most don't make it to that final diagnosis of Hereditary PN. That still leaves more than half of idiopathic cases, with no known cause.

I have seen a CIDP website, a HNP website and the CMT website.

Anything that can be done to raise awareness for PN is great....if I ever get myself to a public athletic event as a participant again, I will gladly wear 'our' colors. I am not famous, I am not Lance Armstrong, but I would be proud to wear our colors, provided you guys are not too embarrassed if I pass out on the side of the road. We can always say, "I tried".

I also think bumper stickers or those clear stickers you can put on your cars are great.....I would love a purple rubber bracelet like Lance's yellow ones.

larry king was on with randy the judge from american idol,they both
were taking about being diabectic 2...larry king also had **** clark
who spoke about having diabectic 2, before his massive stroke,he and
wifes hobby,cooking he said you just learn to eat welll and he took soom
pills,no problem..Same day della reeese,promoting avandia,that and diet
worked,next day my dr, pulled me off of avandia,and all the problems
people were talking about having diabetes 2..mary tyler moore usally
promotes juvenile diabetes,which most thought would be cured by now.

the other day he had randy judge from american idol on,talking about
being diabectic 2 and for the first time larry king mentioned having it
to. i knew about heart attack didn't know this.

we recevied a great deal of money in columbia mo.at the uom for research
on 12 to 15,i thing the ages may be wrong but do to weigh gain
they are using it for research...

oh shoot i could see larry king,but think diane sawyer would be great,she
has done some beilliant stories and has worked with all ages..i have made
a mess of this,yesterday i thought i broke only my wriste well today they
found out i brole my left ankle,pain hit me this morning,been in hospital
all afternoon,i wish i would of said diane sawyer would be great. ha

i'm always amazed how you can say pn to some of the medical flield and
they don't know what your talking about..oh well..sue

this sounds great c thanks,it sure runs in my family and yes i'm a diabetic. s

Kathi49:

You are in a very unique position. You have a close relative who actually can speak to a person WHO CAN REACH MILLIONS.

We will probably never get another shot at this again. And when I said print out the threads, I know you can't print out all the threads.

Maybe you can just get an article on the horror of neuropathy, and then just copy and paste some of the people's stories from these forums.

I mean, hey, it's a start. That is if your daughter would be willing. It's hard, approaching a celebrity, even if that celebrity is a family member.

I once had a family member who was a celebrity. Remember the TV series TAXI with Tony Danza and Danny Devito?? Remember the bar they always hung out at. There was a bartender named Tommy. He would always be washing down the bar and giving them their beers and listening to all their problems. THAT WAS MY MOTHER'S FIRST COUSIN, TOMMY.

He went on to be a tv producer.

I met him a few times. I was always thrilled to have a celebrity in the family.

So if your daughter is willing to be a front person for us, hey, YOU NEVER KNOW!!!

We might just get that segment SOMEWHERE on a tv show.

And we'd all give you a great big hug.

Indeed - all of us fall into a category that many sub groups are very active raising awareness for....

as others mentioned - neruopathy is secondary to so many illnesses - and its the main illness that gets the attention....

however for example, Johnny Cash also had autonomic neuropathy (gastroparesis) and the gastroparesis group - started with small group of people in this country - made sure that this was known to the press and fans and also explained the disorder that was at first cause diabetes....

whenever a patient passes away from amyloidosis - which is even smaller number number of people (estimated 8 in a million) - the cause of death in the past has usually been put down as "heart failure" or which organ was afflicted the most - or put in the paper as a "rare blood disorder"..,. now family members are making sure that it is put down as the primary cause of death - and yes, its attacks the nerves and causes severe PN, attacks the autonomic nervous system, etc... (and ever notice how often it is mentioned on "House"?)

Those on IVIG have advocates fighting for this drug - (auto-immune neruopathy)

I think ribbons or pins are great - people can ask us about them - to maybe be a catch all to people to ask us what the heck? But also, its important for us to be active in the neruopathy groups to raise general awareness - raise funds for research - etc. with groups like the Neuropathy Action Foundation.... again, since this illness can be so disease specific - an unbrella organization is key.....

One person, no matter who we are, can make a difference - as evidenced by these smaller groups - and I truly hope we all can find a way to participate.....

Melody,

I will give it my best shot and try to find various posts. I can't guarantee that Diane would do anything though. In case I might forget, give me a gentle reminder towards mid March.

No problem.

I have written myself a note and on or about March 15 (is that okay), I'll simply bump this thread and say "DIANE SAWYER".

LOL

Wouldn't it be something if this could work???

We can only hope.

Thanks very much

Melody

a 'star' be the sole representative for US????? Isn't that a bit lazy?

We are probably the best, most articulate and visible presences to be advocates on PN issues than any star! So many stars underplay their neuropathies because it can affect their hirability and the perceptions of others about their ability to either perform or do their jobs.

Why are we the best sources? Because we LIVE IT! We know and learn from others here who have far worse PN pains and all the additional complications that come out of the joys of having PN. Not to speak up and educate community, regional, state and national leaders by US is totally and wholly irresponsible. We have to tools to do it. Good tools too!
http://neuropathyactionfoundation.org/index.htm Is the place to check things out. It is VERY complete. This IS a national organization that is very active, advocacy-wise, unlike many other organizations working for our 'behalf'. I did check the Neuropathy Foundation's website and found no mention of a PN week coming up, nor the GBS-CIDP organization.

We are the stars here! We can tell our councilmen/women, senators, representatives best about how PN has disabled us and how our lives have changed due to it! How important issues such as transport for the walking impaired or scooter/wheelchair bound can be difficult; getting a driver's license can be really difficult; and the 'little' things like how we keep the medical profession well in business. Well, you know what I mean. Also, so many who don't understand PN could ever understand, unless first-hand the muscular, sensory and at times autonomic disabilities that PN can cause. Only we can do that best.
Julie? I applaud you for bringing up this issue. I agree we shouldn't let those of others such as diabetes and cancer sufferers be OUR only advocates for understanding and changes, we have to educate the distinctions of our issues as well. Only we can do that effectively. 's - j

You can count me in,i'd be happy to send however much it costs for a few pins.I didn't even know there was a National Neuropathy Week,like everyone here I mention Neuropathy to family and friends and I get (the eye's rolling or what planet did you say you were from) So count me in.~~~ Liz M.from Oz.

[QUOTE=dahlek;229243]a 'star' be the sole representative for US????? Isn't that a bit lazy?
I did check the Neuropathy Foundation's website and found no mention of a PN week coming up, nor the GBS-CIDP organization.



It was in my Neuropathy Asociation News Letter That said May 12-16, 2008 is national neuropathy week. I have since found that the Neuropathy Action Foundation is advertising a 2nd annual neuropathy action awareness day for Thursday June 26, 2008. Weird that they are on different days and months. Maybe it just depends on the organization?