Whenever I have to explain to someone my disease and how it affects me, I find that few people are familiar with it. I know I was unfamiliar with it until I finally self-diagnosed (but it took months for my primary provider to agree).

There are no telethons for us like there is for Jerry's kids. As far as I know, there is no fancy and well-heeled foundation funding research and lobbying Congress.

Where does one go to find statistics about this disease? Numbers of us. Age, gender and nationality?

I don't want to come across as a victim in this, but it would be nice to know how many of us (as a percentage of the population) there are.

Does anyone have leads for where to find such information?

CB

Don't we wish that neuropathy had a much higher profile with a telethon of its own.

The problem is that we can't go on these "walks for (fill in the blank)" that we see happening with other diseases, because many of us can't.

Sanjay Gupta, M. D., who's on national TV (if he still does this) is a neurologist. Maybe he'd do a piece about neuropathy. And then there's Dr. Oz. If they could be persuaded ................

It would be interesting to know how many people world-wide (a ballpark figure)
have neuropathy in one form or another and, I would add, who are not necessarily diabetic. There are so many of us who aren't. But have no idea how to start accumulating the data.

Sheltiemom

the number one cause of peripheral neuropathy worldwide is leprosy. Diabetes is only the major cause in the developed world.

Since many drugs are the cause of PN, I think most doctors are reluctant to address this fact, probably because their pharmacy reps tell them it just isn't true. I think Dr. Oz would really bring a lot of attention to our disease though if he were to discuss it on his show.

I have yet to read anything in the Peripheral Neuropathy newsletter that said anything about drugs being the cause. Joan

Joano, I agree that drugs are a MAJOR cause of PN. I am not sure what it will take for this to be researched better. The other issue is that people don't know that PN is coming on....it isn't like there is one symptom, there can be many, and it can be insidious.

PN is a symptom of many diseases, and yet a disease unto itself....this may be the reason no one has latched onto it. Yep, it would be nice to go on a 'Stop Neuropathy Walk'....I would say run, but, nowadays....running it out of the question.

Was anybody on a statin? I was on three different ones for 12 years - Zocor, Lipitor and Zetia.

My rheumatologist pulled me off Zocor immediately back in February. He said that statins do - not can - cause neuropathy. Have wondered ever since if this was the cause of my small fiber sensory neuropathy but don't know if there's any way to find out.