Musings: Lifting the heavy veil on this chronic pain
The writer is presented Tuesday with the Town of Huntington's proclamation of May 3-9 as Peripheral Neuropathy Awareness Week. Credit: Brooke Gottesman
An estimated 30 million Americans live with peripheral neuropathy, commonly referred to as PN. For many, the path to diagnosis is long, confusing and isolating. Treatment can be even more complex.
As a volunteer patient advocate and ambassador for the Foundation for Peripheral Neuropathy, I've seen how misunderstood and underdiagnosed this debilitating condition remains.
PN is not a single disease but a spectrum of more than 100 disorders that damage the peripheral nerves, disrupting communication between the brain, spinal cord and the rest of the body. Symptoms can range from numbness and tingling to electric sensations and skin discoloration.
For some, PN is manageable. For others, it's life-altering — affecting mobility, independence, careers and relationships.
Unfortunately, many providers lack the education, experience, time or training to identify and diagnose the underlying cause of PN. This leaves patients and families navigating a fragmented system without clear guidance.
Too often, patients are told their symptoms are "just aging," anxiety or something they must live with. Meanwhile, there is a gap between how common the condition is and the level of public awareness, even within the medical community, where clinical exposure to PN may be limited.
Greater awareness is critical. Recognizing symptoms earlier can lead to more timely diagnoses, better treatments and improved symptom management — potentially slowing or reversing nerve damage. Healthcare professionals require more education about PN from diagnosis to treatment.
Sustained investment in research is essential to developing targeted treatments and, ultimately, cures.
Peripheral Neuropathy Awareness Week, the annual national call to action that took place last week, is a chance for patients, caregivers, clinicians, researchers and advocates to raise awareness and push for better care, education and research.
Patients deserve clear, accurate information about what's happening in their bodies and what options exist — from lifestyle and dietary changes to physical therapy, medications and emerging therapies.
Awareness is where it starts. Understanding, innovation and hope must follow.
Stacey Udell, Melville
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