Where is the philanthropic attention to this disease?

Posted by larry4343 @larry4343, Mar 13, 2023

I have read that there are something like 5 million Americans with idiopathic peripheral neuropathy. Millions more have a diagnosis, but still few treatments. At the time of that publication (a few years ago), there were no clinical trials ongoing. By contrast, there are presently hundreds of anti-cancer drugs at some point in the development and test cycle.

It seems to me that one reason there are not better treatments is that there is a poor understanding of many aspects of the disease, including very little understanding of the mechanisms underlying the nerve damage.

IDK if this has been discussed in the past, but I have to wonder what people and organizations are doing to fund more research in this area. Researchers are helpless without funding. Until more money is allocated, I don’t see much progress coming our way any time soon.

Thoughts?

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Lagrange 5 | @lagrange5 | Mar 13, 2023

I suspect that it is just now being recognized as significant enough to get more attention. What has gotten a lot of attention are the death causing conditions, like cancer, heart attacks, and AIDS, maybe because so many well-known people have died from. PN tends to manifest later in life, when the oldest population already is dealing with other medical maladies. Someone told me that too many doctors simply will monitor, not treat, a serious disease if the patient reaches a certain age...70's? ...80's? There are "standard" tests to rule out the most common causes of PN, like diabetes and alcoholism. Once the most common causes are ruled out, it becomes a far too easy to say "idiopathic", instead of "we don't know". Not all neurologists are subspecialized in PN. It is far easier to refer you back to your PCP than to another neurologist, who may have superior knowledge and experience.

As more PN cases are diagnosed, more attention will be given to them, and more research and education will follow. Probably more subspecialists will evolve. Eventually, the private sector, i,e. drug companies, may become invested. That usually becomes the paradigm shift. For example, the drug companies, with government participation, developed Covid vaccines. But for right now, it's up to the patient to be proactive and keep looking "patiently" for the right doctor and/or the right medical system. If you can't find one, do your best with Dr. Google. Or follow these discussion threads for anecdotal practical solutions. I intend to keep looking. If I get more answers, I'll share them.

John, Volunteer Mentor | @johnbishop | Mar 13, 2023

Actually there is a lot of research and organizations out there offering help for us. Maybe not as much as we would prefer but better than some other rare disorders. Of course the one most near and dear to my heart has disbanded - The Minnesota Neuropathy Association, although it's still listed here:
https://neuropathycommons.org/content/neuropathy-support-groups.

The Foundation for Peripheral Neuropathy also has a similar list of support groups - https://www.foundationforpn.org/support/support-groups/.

Locating Clinical Trials - https://www.foundationforpn.org/find-a-clinical-trial/