How do we get the word out?
 

If it is estimated that 10-20million Americans have Nueropathy and yet only about 7% have ever heard of it, how do we raise awareness of this chronic neurological disease? Any body have any ideas?

get it on Oprah....
 

Until she gets it, we will have to wait, I guess.

If you could have seen the blitz on the questionable remedy called Airborne that she started, you'd understand. :p

Now that is the best idea yet.

I'm going to write my letter to Oprah (and to Dr. Phil, and to Montel Williams).

Can't hurt!!

Melody

That is a great idea. I hope you do write to them. I will too. Anyone else want to join in??

We should ALL write them. I'm game - how do we find the address info? Any way we can avoid being put in a big pile of fan mail?

Nancy

Until we get someone famous to admit it (Andy Griffith has PN & I think Mary Tyler Moore - as a result of her Diabetes- but they won't talk about the PN)
and steps up like Michael J Fox with Parkinson's - we won't get the coverage we deserve.
I hope the letters may motivate someone, but I think unless you can get someone with a severe case to be a 'poster gal/guy' the interest just ain't there.

lacks star power
 

I think Bob and MrsD are absolutely right. There have been celebs w/ PN like Janet Leigh, Johnny Cash, Julia Child, and Andy Griffith (Guillen-Barre) but no-one has done for PN what Michael J. Fox has done for awareness of Parkinson's disease or Christopher Reeves did for spinal cord injuries and quadraplegia. It seems that unless someone is a celeberity or famous the interest in PN isn't there. Then too PN is not a readily or highly "visible" disease in many cases so peoples' suffering, while intense is not apparent or recognized.

IMO it's very sad that a condition that afflicts so many and will continue to increase in numbers, particularly w/ the worldwide diabetes epidemic is so underfunded.

Alkymst

I am sure most of these people have some sort of web page (myspace?) Maybe with enough requests we could get them to stand up.

I've written about this subject numerous times--
 

--particularly on the old Braintalk, and been quoted in a number of articles about the subject; sadly, they haven't gotten much distribution.

The new Internet possibilites do hold out hope, though.

I do think a great part of this is that neuropathy is considered to be secondary to many other conditons and not a condition in its own right. Mary Tyler Moore is very involved in promoting diabetes research, for example, but I suspect looks upon her neuropathy as simply a consequence of diabetes.

And, I've made some criticisms of the Neuropathy Association for the way they've gone about trying to get publicity; it hasn't been very consistent or organized.

Take a look at:

http://jscms.jrn.columbia.edu/cns/20...os-neuropathy/

And this other thread we had here about the subject:

http://neurotalk.psychcentral.com/showthread.php?t=9611

Why don't one of you post a letter (Let's say to Montel or to Oprah), write it and explain that neuropathy does not only affect diabetics, but affects millions and millions of people. That we need a spokesperson to help us get the word out.

If I see it on this thread, I will copy and paste it and send it to every single host of every single tv show. And hopefully, we can get the word out!!

Mel

Hmmm
 

There is one wealthy socialite who has a huge fund raiser every year,
when my brain fog lifts and i remember who it is,let's think about
that letter writing they all have web sites. Mary Tyler Moore already
does a wonderful job raising money and making our so called goverment
aware of a cure for Juvenile Diabetes. Johnny Cash mentioned PN just
before he died,but seemed very confused about it. Perhaps we could get
his children to speak up on Larry King. Sue

Drug companies
 

are running ads in the magazines. This is the drug, and its website:
http://www.lyrica.com/content/main_h.../main_home.jsp . Its a variation of Neurontin .

When my PN started, four primary care physicians I saw in a row had no idea that there was any known condition with my symptoms of burning feet with numb areas and areas of extreme pain and aching. Brilliant as they were, the first three didn't even do a neuro screening. Instead they suggested tranquilizers (Librium?) and/or referral to a psychiatrist. They refused to send me to a neurologist. The forth, bless him, didn't know what was wrong, but he did a neurological screening and referred me to a neurologist.

Then Neurontin for PN started to be pushed by the drug companies. The drug salesmen educated the doctors and now most doctors are familiar with PN as a condition. That's a pitiful route for medical continuing education, but there it is.

As the boomers age and PN gets more common, it will pay big pharma to start running TV ads. THEN the word will get out to the general public.

Was reading through the old thread from this topic back in December and came across this from KMEB

Just came across this site - worth a serious gander - not only the basic info about PN, Ins. issues etc - but most improtantly for this thread - a section on advocacy - how important it is for all of us to get involved in raising awareness of our needs - and even specific information with "how tos" - how to work with and speak to media, govt officials, etc........ check it out!

http://www.neuropathyactionfoundation.org/index.htm

There is actually a function coming up on June 26 in San Francisco, California. Take a look.

I've written Oprah, Dr. Phil, Montel, and others...
 

I've got a sister with MS, and I call it MS inside out! See, she was the "good girl" sister, so she got the "quiet" disease that isn't painful, and I was the wild child out of control one, and I got the wild out of control painful disease!

However, we are 1/2 sisters, not raised in the same house, we only share the same father, not the same mother... so it "may" be genetic, and it "may" be coincedence.

Anyway, I wrote Montel because I want him to understand that there is a similar disease to MS that is more painful.

I think that if they get a "flood" of letters from us, it will raise some eyebrows and they will pay attention! One or two letters a year won't make anyone pay attention, but if they get 10 or 20 letters in one week from different people all over the country, they may see it as more than a coincedence! I think if we coordinate this well, we could be on to something!
And if they don't listen the first time, we do it again, and again, and again, until someone does listen! We've got to get the attention of people who can help with this. I'm sure there are people out there who are interested in making money off of our problem somehow! And if we can get our story heard and some more research and medications for us as a result, I'm willing to write letters, go on talk shows, and scream a little!

Terri

Really glad you're getting the word out, but pain is a big problem for many with MS, and pain is not always a problem with PN. Both vary a great deal from individual to individual, and, in fact, people with central nervous system damage due to MS often have peripheral neuropathy as a side effect in addition to horrendous spasms and other painful processes.

rose

The website I quoted above gives information on how to write letters and lots of other good information. I am the type of person who hates to just talk about something. I want to put action to it. We need to get together on this and make it happen. :grouphug:

The letter
 

Has anyone given thought to writing such a letter? Does everyone agree with Mel's suggestion?

Nancy

I agree
 

I'm just not sure that I am the best person to do this type of letter. I know there are more of you out there with more experience and knowlege than I have.

Well, when I wrote to Oprah, I just spoke from the heart and asked her if she (or she could nominate someone) to be our voice. I explained about Neuropathy, that there are many causes and so far there is really no suffcient pain management for most of the people who have neuropathy. I asked her for her help.

Just like Parkinson has Michael J. Fox, and Montel is for MS, so we should have SOMEONE!!! A public service announcement by someone who walks in our shoes, well that would move mountains.

Here's hoping!!!

Melody

did you just recently write to Oprah, or was this sometime in the past?

I wrote to her yesterday. I believe she receives thousands of e-mails every day, but one never knows!!!!

Melody

I did it
 

I just finished a one page letter. I am going to mail it to everyone I can think of. Do you think e-mail or US Postal mail is the best way? Thanks for your encouragement!:Thanx:

I used the following information as a guideline for my letter. Just personalized it to fit each individual person. I hope more of you will be encouraged to write:

Letter writing is an effective way to persuade legislators to support your position. State legislators receive an enormous amount of mail each day, so give careful thought to your letter. If you know the legislator, make that clear in the first paragraph. This will alert the person opening the mail to give the letter special attention. Write your letter on your business letterhead. Some legislators downgrade the importance of a letter if it is obviously part of a letter writing campaign. Therefore, avoid form letters. Mass-mailed postcards are a waste of your time and money. Make your letter as personal as possible.

Try to keep your letter to one page in length. Use your own words and cover only one issue per letter. In the first paragraph, ask for the action you want the legislator to take. Identify the legislation clearly by name and number. Chances are good that the legislator is aware of the political fallout of not voting for your issue, so do not mention it. Be certain your legislator receives the letter before a vote.

Thank legislators who support your positions and let legislators who do not know of your disapproval.

A Checklist for Letter Writing

Letters should be on personal or business letterhead with a return address on both the letter and envelope.
Each letter should be about only one piece of legislation and should identify the bill by its number and author. Make sure you tell the legislator how you want them to vote.
Immediately reference the bill number, author, and action you want. Restate what you want in the last paragraph.
Legislators discount pre-printed form letters, even if the wording is the same. Make sure you copy the letter on your own letterhead in your own handwriting.
Stress how a particular issue would affect people in the legislator's district - namely you.
Try to keep your letter to one page, but bear in mind the reader may not be familiar with the subject matter.
DO NOT include anything you would not want quoted on the evening news!
Ask for a reply indicating the legislator's position.
Use the proper form of address:

Its a good idea. I actually just saw Montel on a talk show talking about his ms and not giving up but learning how to function through. I wonder if these stars have issues with docs too? That is my huge issue right now. I will write a letter too. I agree that they get a huge amount but will see. In the past I wanted to write about eating disorders and insurance. When I was in one of my programs it costed 1600 a day and not covered. I was on deaths door mentally and physically. Its hard to educate the public/gov when the issue doesn't effect the mass if that makes sense? It can't hurt to write it and if anything will help us to use our voice.

Rose,
I was not aware that MS was painful! My sister does not have the painful type of MS. I apologize for making an uneducated comment and hope that anyone with MS can forgive me for assuming that "all" people with MS are like my sister.

Sorry my comment was abrupt. :( I didn't mean it that way.

I think most people would recognize your sincerity!

rose

If
 

I missed it sorry been to 6 Dr.s in last 2 weeks. My daughter also mentioned
how many medical problems that lead to PN. For instance people with
aids get PN problems from the meds. they must take. Or my Diabetes2,
as well as Sjogren's Syndrome. Which now i found out this week will
put me in Cancer hospital on July 2nd for Lyphoma tests :eek: and
i think a few prayers would always come in handy (thanks). Lip
Biopsy's make you drool. Iv'e seen Montell cry alot when he first found
out he had MS,i would to. I believe he get's most of his health problems
taken care of in Sweden.

One thing if our Mel said she wrote a letter,we know she did,i know
sometimes these posts get a little confusing. I had a Dr. ask if i was
sure my PR wasn't from the truma of being a nurse for so long,or
perhaps the headon collision. D has even questioned her yrs. of
eating habits,this is not the first time i've heard that. My childeren
and there many friends are writing about it on there many Websites.
It may be a little at a time,but we or our families,or our neighbors,
I guess what i'm trying to say we who have it,should speck up,to lead
perhaps someone who is suffering in the right direction. I don't want
anyone to have to see 1 Dr. let alone 6 in in less then a few weeks.


I got my new shoes yesterday and so far i haven't thown them out the
door and my cmpression hose feel fair,oh and the shoes are cute. More
then anything i don't want our grandchildren to go though this. And it
was so odd when they told me i was going to have to go to the cancer
hospital,i didn't cry,when a Dr. Swan tells me i will be seeing a Dr. Doll
it made me laugh,but i had to hug a 1st yr. med. student he had a tear
in his eye, welll maybe that's good. We must never give up. Sue

Oh no,Sue
 

Shiney Sue,
I'm so sorry to hear your news about the hospital. Lymphoma, that's another of the silent gifts Sjogren's gives you.: I hope Dr. Doll is really good to you. I admire your courage and the way you stand up to things. Good thoughts are going with you from me. :hug:

Billye

Sue:

Sending you lots of hugs and good energy.

Don't give up.

Melody

sending positive thoughts...
 

I hope it is not lymphoma... just focus on that.... IT is NOT Lymphoma...etc.
Consider it a rule/out procedure!

Oh SUE!
 

I agree with MrsD - it is simply another step in ruling out OTHER issues!

Really a Dr Swan and Dr Doll? Golly that's neat, far better than the Orthopedist where I grew up was - Dr Bump! No kidding here!
I also had an adopted GP years ago who was really a heart surgeon - Dr Romeo.

When I started having vision issues [since diminished] my neuro-opthomologist sent me thru what must have been the entire Cardio-route...not the stress tests tho...didn't get that far. Came out all clear - He flat out stated 'At least, that's one more thing OFF the list!'

Six docs in two weeks is a LOT! Amazing how our lives seem to revolve around those dratted appointments? I've gotten lucky..I don' have any for about 2-3 weeks [aside from infusions]...I've been going so often that I now feel like I'm on vacation!

Keep heart - :Heart: - j

"It is not lymphoma." Sounds like a good mantra.

Best wishes,

rose

Thanks to all of you. And Mrs. d I shall consider it a rule/out precedure.
That's exactly what my hubby would of told me to do. But 6 docs.
in such a short periiod time,i kept waiting for Dr. Vertigo,Dr. Dizzy and
Dr. Spin-a-round. Umm Dr. Doll is just that must keep a possitive
attitude. ;) J so funny, :grouphug: to all. Sue

Great!
 

I love your sense of humor and your attitude. Keep up that laughter and keep that chin up. There is no lymphoma!! We won't let it be. And don't forget, they are treatable if found early enough, but don't worry, you don't have one.

We know.
Billye

Hi Sue, I am just another to add to your support group here, i am wishing for the very best outcome possible.
my very best wishes to you,
Brian :)