Neuropathy: 20 Million Suffer From a Condition You've Never Heard Of

This week I spoke at a conference for people in Northern California who suffer from neuropathy (ner-OP-a-thee). Most of you are asking, what is neuropathy?

In fact, for the weeks leading up to my participation in the program, that question was asked of me almost everytime I mentioned the invitation. What is neuropathy?

I had a few ideas. My dad has peripheral neuropathy. My former next-door-neighbor has idiopathic neuropathy, and my husband who has diabetes faces the prospect of a neuropathy diagnosis some day. So I spent some time learning what I could about neuropathy before I spoke to this group because what they deal with needs to be understood. It's scary stuff, and in so many ways, it seems like it's being ignored.

Neuropathy seems to be both a symptom and a condition. It's a short-circuit, or an interruption in the electrical impulses of the nerves in any extremity in the body, and it ends up being horribly painful, or totally numbing, or anything in between. It can be caused by a number of other medical problems, like diabetes, but most is considered "idiopathic" meaning the cause is unknown.

At its extreme, neuropathy is terribly painful. For some patients there is a tingling feeling in the feet or toes or fingers or hands, as if they fell asleep. Maybe you've seen the drug ads aimed at patients with neuropathy? Hundreds of bees stinging someone's foot. Just think about that for a moment, and know you would have to live with it day in, and day out.

I had some takeaways from the conference that are worth sharing with you, because we can learn from what's being done (or isn't being done) in the neuropathy world. Here are some random thoughts:

• Patients with neuropathy are as frustrated by diagnosis problems as anyone else. There are at least 100 different forms of neuropathy and it can be caused by dozens of other problems: diabetes, injury, chemo, other toxins, even alcoholism. Unfortunately, the cause of this short-circuiting for many patients cannot ever be determined.
• Doctors can't agree on treatments, and patients get confused. There was a surgeon who was citing statistics on the success of several surgeries similar to carpal tunnel surgery. But a few speakers later... two doctors were very clearly anti-surgery.
• For some neuropathy patients there are some infusion-type treatments that work very well, including one called IVIG which uses blood platelets. The problem is, insurance companies don't want to cover IVIG. Some patients who have been treated successfully with IVIG for months, even years, find insurance coverage for it suddenly dropped. An organization was founded a year ago to help patients defend their need for infusion treatments and it has found quite a bit of success. But I find it's a shame they have to work so hard. The success of the treatment is well-documented. Patients are able to return to normal function. It should be illegal for these insurance companies to deny this treatment.

Neuropathy is not an orphan disease. With 20 million sufferers, it's not even unusual. What separates neuropathy from other conditions is less the condition itself, and more the proactivity from the people who suffer from it, and have committed themselves to combating the forces that make it even more difficult. I met several of them, and they an impressive group of people. Dominick Spatafora, Michelle Vogel and Bev Anderson are sufferers and activitists, too. (And if some person or organization gets in their way? Stand back!)

If you or someone you know is running into problems getting the care you need, or gets stonewalled by forces that would stand in the way of your health, take a page from the book of those who stand up for neuropathy sufferers. Join forces, learn from each other, stand up together and you'll begin to find some progress.