Lyme Signal: How One Patient Experience Became a Living Library

Luba Vovk | 1 week ago | in Share Your Story [VOTING NOW OPEN]

After a bite left my arm and leg numb for more than a year, I searched desperately for answers. My journey through uncertainty, unconventional choices, and patient stories taught me how powerful lived experience can be—and inspired hope that our stories can help each other.

Story Overview

I am a healthcare professional, patient advocate, and someone with lived experience navigating tickborne illness. After a bite, I experienced numbness in my right arm and leg for more than a year, along with debilitating fatigue and uncertainty about what to do next. I searched patient forums looking for people with experiences like mine and discovered an enormous amount of knowledge scattered across individual stories. My own struggle to find answers inspired Lyme Signal™ and my belief that patient experiences, when shared and organized responsibly, can help us ask better questions and identify signals worth exploring.

Target Audience

Patients, clinicians and researchers

Priority

My priority is making the collective experiences of people with Lyme disease easier to learn from. Patients often spend countless hours searching scattered forums and online communities for others with similar symptoms, questions, and experiences. Valuable lived knowledge is being shared every day, but there is no simple way to see it together. Organizing these experiences could help patients feel less alone, help clinicians better understand what patients are reporting, and help researchers identify recurring signals and unanswered questions worth investigating. No patient should have to search alone for patterns that may already exist across thousands of stories.