Me — just a regular person trying to help

I’m not a medical professional or a polished spokesperson. I’m a regular person who got sick and had to figure things out the hard way. I served in the Army, worked construction, have been a janitor, I’m overweight, and I don’t come from money. I’m the average American who woke up one day with strange symptoms and then spent years navigating a healthcare system that often feels cold, confusing, and dismissive.

About four years ago I developed what was later diagnosed as Non‑Length‑Dependent Small Fiber Neuropathy. Early on, I was exhausted, constantly running to the bathroom, and my stomach was a mess. The symptoms kept stacking up until burning and shooting pain finally pushed things over the edge. A neuromuscular specialist confirmed NLD‑SFN and prescribed gabapentin. Like many of you, I left that visit feeling like there wasn’t much else to be done.

That period took a heavy toll on my mental health. I’m grateful for my wife and for mental healthcare—both kept me going. Today I deal with autonomic issues that touch most daily tasks. The pain is often manageable with medication, and I’ve learned ways to live with the condition. I don’t want anyone else to go through the fear, confusion, and loneliness I felt.

I’ve also met characters along the way—people eager to start communities or nonprofits—who struggled to operate safely and legally. To be clear about where I stand: I won’t be part of anything involving self‑experimentation, trying to source research drugs or chemicals from overseas/black‑market suppliers, or efforts led by people with professional conflicts of interest. That’s not how we help patients. We follow the rules, protect people, and do things the right way.

For transparency: I don’t work for the government with conflicts of interest. I’m not a medical professional with pharmaceutical ties. I don’t carry prejudices—this space is for everyone. I’m just someone with SFN who cares about people in pain and wants to make the path easier.

If you’re new here, I hope what we’re building helps you feel less alone and gives you practical steps you can use today. Thank you for being part of this community—I’d love to hear your story when you’re ready.