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Patient Stories

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Living with Peripheral Neuropathy: A 30-Year Journey of Challenges and Hope

Meet Jason B., a husband, father, supporter of FPN, and an SFN patient, as he shares his journey living with peripheral neuropathy.

January 2, 1994, 24 years old, a recent college grad. I was flying from San Francisco to home in San Diego when I felt an unusual, cold yet burning sensation in my legs. Little did I know that this sensation was only the beginning of a 30-year saga.

Like most recent college grads in 1994, my thoughts were consumed by my new career and saving for a car. But when peripheral neuropathy (PN) hit out of the blue, I felt so alone because nobody else I knew could relate to it. Ultimately diagnosed with small fiber neuropathy (SFN), I pondered its trajectory. Despite appearing fine, some surely questioned my authenticity, a doubt I shared initially. There was such a dizzying array of symptoms that would come and (sometimes) go. What would become of my once-promising future? I felt broken, flawed, and lost. It took years to emerge from deep depression, only after accepting PN as part of my life.

Living authentically with peripheral neuropathy

I could write a completely uplifting story about how I conquered PN with a wonderful attitude throughout, but to do so would be disingenuous, and I must share my lived experience authentically. I am immensely proud of all I’ve accomplished despite my diagnosis: I managed to complete an MBA at Stanford University and have gone on to success in my career, becoming Chief Financial Officer of two companies. Far more importantly, I married an amazing woman with whom I share three beautiful sons. They are the blessings of my life.

The challenges of living with peripheral neuropathy

PN has brought a myriad of challenges. I have been coping for 30 years, not knowing why I have PN in the first place and dealing with that dreaded “idiopathic” word. The vast number of symptoms that come and go at apparent random. The physical pain that is ever-present. With this disorder, the emotional toll is not adequately recognized. There is a saying that acute pain changes how you feel, and chronic pain changes who you are, and that rings true for me. PN has made me play defense rather than offense. Friendships are not as full as they would otherwise have been. I am frugal to a fault, fearful of the proverbial “other shoe” dropping and sidelining me. I struggle to relate to others because PN is relatively rare, and hence so few can relate to my lived experience.

From a care perspective, I’ve tried many medications, all with negligible relief. Gabapentin, still the first-line medication for nerve pain, was approved in 1993. Jurassic Park was the most popular movie, and Whitney Houston topped the pop charts. With artificial intelligence, drones, and self-driving cars, how is it that we have not done better than gabapentin in 30 years? I find this completely unacceptable, and I hope you do too. As patients, we must demand that the scientific community does better.

Hope, and future advances for PN

Hope, of course, is a critical component of our ability to keep moving forward. Today there are new gene therapies for cystic fibrosis, and new commercials air seemingly weekly for new drugs to treat autoimmune conditions such as psoriasis. I am happy for those patient communities. But it is our turn to see advances in PN diagnosis and treatment; it is our time to see hope become a reality. I challenge anyone to name a disorder that afflicts more Americans (in this case, 30 million) and about which such little awareness exists. We must change this and pass the baton elsewhere. PN must emerge from the shadows.

For that to happen, we must think big. Really big. We can do more to reach thousands more in the PN population, even millions more. Each of us must take what I call the graceful warrior mindset. This means always being a fierce advocate for PN but always doing so with grace and dignity. The late David Bowie once said that it is best to do nothing if you are not trying to do something great. We can do something great, but it takes all of us. All of us raising awareness about PN, and all of us contributing what we can financially to allow for the vital research that will lead to breakthroughs.

Here are some ways to get involved (links provided by the Foundation for Peripheral Neuropathy):

Let’s roll up our sleeves and get to work.

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