From Childhood SFN to Scientific Advocacy
Introduction
I am now 28 years old, and I have been living with Small Fiber
Neuropathy for 18 years. My journey began when I was just ten years old,
at a time when even fewer doctors knew about this condition than they do
today. I'm sharing my story because I want others to know they're not alone
in this struggle, and because I believe we need better awareness and research
for SFN.
When It All Started
Everything changed for me at age ten. I was sent to an away camp for a week for the first time. The night before I noticed my feet were burning and had trouble going to sleep. By the next day I had all kinds of sharp and bee sting pains that migrated all over but especially hurt my feet, legs and hands. The nurses at the camp said I was just homesick. I cried but I knew I'd be OK because as soon as I got home, I could go to the doctor's and they would sort this all out. I was so naive.
Getting a Diagnosis
Of course, the doctors didn't know what to do with me. When they found nothing they insisted it was growing pains, anxiety or my favorite, I was just attention-seeking. One helpful doctor suggested it could be neuropathy but I didn't have diabetes so it didn't fit. I learned quickly that doctors knew a lot less than I had thought and wouldn't be the saviors I was taught to believe they were. It took until I was fifteen to get a diagnosis of SFN and not because a particular doctor I ran into took the time or energy to look further into my case.
I was lucky, as even fewer people knew about SFN back then, but a family friend recommended I get a skin biopsy. I was thrilled at first. But then they tested me with an antibody panel, and I was negative. I tried oral prednisone and it had no effect on me. I was told it couldn't be autoimmune so therefore it was idiopathic and there was nothing they could do for me. I was sent to pain management where I trialed many typical and less typical drugs and treatments but I am still looking for one that will help me to this day.
By then I had developed GI symptoms which were later diagnosed as gastroparesis and dysautonomia. I had started losing my hair and was diagnosed with alopecia areata. These are all symptoms I now believe are related to my SFN.
College and Career Path
Previously, a basketball player and a top cross-country runner, I had to give up my sports as my body declined further. I kept looking for anything to reduce the symptoms but so far, I have only been successful with my hair and none of the actual, painful symptoms. I was a good student, but because of my SFN and the lack of proper treatment, we didn't know if I'd be able to go to college. I pushed to go anyways and only applied to schools with top medical facilities for my conditions.
I knew pushing through would be worth it because I studied biology and neuroscience and I was going to become a scientist and help find better treatments and someday a cure for people like me. Again, I was so naive. Unlike Star Trek, one of my favorite shows since I was kid, scientists only get to study diseases that there is funding for, that the public cares about. Few know about SFN and few have deemed it worthy of study. In fact, no lab in my undergrad institution or my grad institution (a large state school!) is studying any type of neuropathy let alone SFN. Only a few niche labs across the country are studying it and at least for now I am required to study something else, something that, although rarer than SFN, the public and government has decided is worthy.
My Current Reality
I am now 28 and nothing has changed for me except that I've gotten worse. I had hoped over several decades we would have more research, better treatments but with so little SFN funding progress moves at a snail's pace. It is unfair and unacceptable that millions with SFN and related conditions are ignored. I hope one day, with the help of this new organization this changes. Maybe, one day I will even have the chance to apply the skills I have developed to study SFN in the lab.
Written by Eli, age 28, Minnesota
September 16, 2025
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