The Patient-Identified Problem and Patient-Infused Solution

Lived Experience Data (LED). This organization was founded because patients from all over the world found each other on social media, started talking, and realized it did not matter which AiArthritis disease we had, we all shared similar symptoms and diagnosis journeys. The 'ah-ha' moment was we realized we all shared "auto" (Autoimmune or Autoinflammatory disease) symptoms (fatigue, brain fog, etc.) and classic inflammatory arthritis symptoms (pain that felt like an injury, bone bruise, jumping from location, starting and stopping for no apparent reason, severe stiffness after periods of rest, etc.) We thought, "If we group these diseases together and teach the world what symptoms to look for, then maybe we could expedite earlier detection, referrals, and diagnosis (and then less "Mystery Patients," which is unfortunately common)."

Confirming LED with broader research efforts. In 2014, we conducted the Early Symptoms of AiArthritis Diseases, our first research project to investigate the prevalence of overlapping "auto" features, regardless of diagnosis. The work conducted in this project is the basis for our continued efforts to collect patient-reported symptoms in early disease, which we will use to develop early detection materials for both the public and medical professionals (i.e., primary care physicians, emergency rooms).

The Solution: The Early Detection Awareness Equation.  We realized a potential solution to expediting diagnosis may be as simple as an equation: AUTO + Inflammatory Arthritis = X. And, if not X (one of our diseases), then maybe it's Y or Z. Given the frequency of fibromyalgia as a misdiagnosis or comorbidity, and the new realization of IgG4 Related Disease ("IgG4-RD") being detected in many with our diseases, we chose these two as our initial Y and Z diseases.

Potential Impact: This early detection equation will help both people who suspect they may have one of our diseases, as well as health practitioners, narrow down the possibilities. As a result, we aim to expedite detection and diagnosis, leading to earlier treatment intervention and increased chances to achieve drug-free remission.



This is a phase one project. In 2026, we aim to conduct multi-stakeholder focus groups (i.e., patients, primary care/general practitioners, rheumatologists, gastroenterologists, dermatologists, and other first-line professionals who may be responsible for referrals or diagnosis) to help co-create final tools that can be integrated with our other Health Care Professionals (HCP) Communication Aids. If you are interested in financially supporting these efforts, or participating as an HCP advisor, please contact tiffany@aiarthritis.org.

Learn more about this project by listening to or watching Episode 82: AUTO + Inflammatory Arthritis - Diagnosis, Please!, Episode 90: Why Won't They Diagnose Me? & Episode 109: Searching for Answers: The Mystery Patient Experience and the Overlap with IgG4-RD