I know it is early, but May 12-16th is National Neuropathy Week. I can't find anything for ribbons or bracelets etc. Since the Neuropathy Association uses purple, I decided to use purple to spread the word about Neuropathy. I had purple bracelets made that say "Neuropathy" on one side and "Awareness Educate Support" on the other side. I passed them out to everyone I know. Last night I made purple ribbons and put magnets on them. I passed them out to people I work with to put up in their work stations.

I was looking on the web last night for awarness pins. I found I could have purple pins with NEUROPATHY down one side of the ribbon made. Minimum order is 100 and will cost me about $220.00. I think it would be worth the investment if people would take it seriously and really wear them. I know with the bracelets, people wore them for only a day or two and then have just forgotten about them.

Do any of you do anything to spread awareness? Would you be interested in a pin if I did purchase them? So many people out there know nothing about or have ever heard about Neuropathy. If they were made aware sooner, maybe they would not have to go through it as severly as some of us. It's pretty bad when even doctor's have not heard of this terrible disease!

Julie:

I do commend your spirit. However, every single person that I have told about Neuropathy, gave me a blank look. Even the one's over 50. As long as they are healthy, they don't want to hear any bad news.

And forget about the younger people. I'm talking about the majority of the population, not the few younger compassionate ones that I might meet up with.

People, today (and this is just my humble opinion), seem to care only for themselves.

I gather that we have to be our own advocates, our own caretakers, and do the utmost that we can do to keep ourselves as fully functional as we can.

I have yet to meet a person, who when I mention the word Neuropathy, knows what I'm talking about, and if and when they do reply "Neuropathy, what is that?" and I start talking about nerve damage and mylin sheath and diabetic neuropathy (which is what I have), well some people get this horrific look on their face and they go "Oh my god that's awful, I would just die if this happened to me".

Yeah, lousy, but very very true.

I most certainly wish you well in your doing whatever you are doing during Neuropathy Week. I had not known of this occasion.

Wouldn't it be wonderful if 20/20 or 60 minutes or SOMEONE would do a segment on it, introducing the piece as "This is Neuropathy Week, we'd like to inform our viewers exactly WHAT IS NEUROPATHY".

I can actually see Diane Sawyer doing this segment. She would be perfect.

They could have people with neuropathy talking about the pins and needles, and numbness, and explain what they are going through.

People just might sit up and say "wow, I had never heard of this thing".

One can only hope.

I have written to several news media people but have heard back nothing.

--about raising awareness of neuropathy, and about the problems we've had doing that, especially as compared to the awareness that's been raised about MS, and Parkinson's.

Having a famous spokesperson/sufferer does help (MS has many--Montel Williams, Terri Garr, etc., and Parkinson's has Michael J. Fox) tp focus attention and research donations. And, more people suffer from neuropathy than MS and Prakinson's combined. But, since neuropathy is often considered secondary to some other primary condition, such as diabetes, the famous who've suffered from it don't seem to look upon it as worthy of much focus (and there are a number of famous neuropathy sufferers beyond Mother Dolores Hart--Andy Griffith, Mary Tyler Moore, Bobby Short, Johnny Cash--but again, most of them have it secondary to something such as diabetes; Mary Tyler Moore has been very active with that condition, for example).

We all have to do what we can--these boards are a start. A number of us have been interviewed for articles in Neurology Now and other places. I've been quoted a number of times. But a great leap in awareness might take someone of the order of Brad Pitt suffering from it (not that I wish it on him or anyone).

Julie, I would buy some pins from you. I wish we could get the word out like cancer has the word out for the Relay for Life. We should do something like that during Neuropathy Awareness Week. Maybe then we could get some attention!!

Thanks,
Michele

Melody,

I am smiling because Diane Sawyer is actually my ex sister in law. Long story, but will say instead...my daughter's Aunt. My daughter and her fiancee plan on going to New York next month. If you want, I can always have my daughter mention it to her. I have no idea how far it will go but will say this much. When my daughter was born prematurely, Diane did do a segement on premature babies. Anyway, yes, I wish there was more of an awareness regarding Neuropathy and sometimes I wish I had a "Dr. House" LOL! I think all my doctors are great...but it would be wonderful to have that "one" that could figure EVERYTHING out.

I am not really looking to sell them, but would be willing to send them out if they would be put to good use. I think we just have to keep trying to spred the word and not give up. This is so debilitating and If others are made aware maybe they could find the cause of it before it is too late and they end up like some of us.

Anything is worth a try.

Kathi49:

Do us a BIG favor. Print out some of these threads. If you can get a head to head meetnig with your ex sister-in-law, (or your daughter could),than this could be the biggest thing to hit the neuropathy world in a long long time.

See, we don't have a Michael Fox, or a Montel. We really don't have anybody. And neuropathy is really taking it's toll.

So if SOMEONE could do a segment on this horrible disorder, disease, symptom, (call it what you will), It stinks and it robs people of any quality of life.

I think, for some reason, I thought of Diane Sawyer. I was picturing her speaking about Neuropathy (all this was going through my head), and I mention her in a post, and she turns out to be your ex sister-in-law????

What did one person write once??? THERE ARE NO COINCIDENCES.

Hey, give it a shot. You'd be the hero of the neuropathy board.

And even if she is not able to do anything, perhaps she can pass on the idea to Barbara Walters, (think THE VIEW). Now wouldn't that be something to see on tv??

You take care.

You'll probably get a lot of "..you can get it done cheaper than that..."
But @ $2.20 a pin, plus postage of $0.41 - cost is approx $2.75-$3.00.
I'd gladly send you the $3 bucks if you'd send me one.

Melody,

LOL! I could try but it is my daughter that speaks to her often enough. So, I could print these off and have my daughter hand carry them to NY this month. I am just not sure though...Diane always seems to have something going on. But it doesn't hurt to ask.