Unraveling the Diagnostic Odyssey: Insights from Our Recent Survey, part 1.

Those with DYNC1H1 Associated Neurological Disorders (DAND) understand the challenges of living with unexplained symptoms, bouncing from doctor to doctor, undergoing numerous tests, and still not having a diagnosis. This experience, often referred to as a "diagnostic odyssey," is growing shorter for those with DAND as genetic testing that includes DYNC1H1 becomes more commonplace.

While the journey is a challenge, the DYNC1H1 Association (DA) is working to understand how we can use the vast wealth of information gathered during a diagnostic odyssey to accelerate research towards a cure. We conducted a survey targeting individuals who have navigated this challenging journey and registered in our Patient Contact Registry. The results shed light on the emotional, financial, and physical toll of both the diagnostic odyssey and day-to-day struggles experienced by DAND patients and their families. This information drives our decision-making, and motivates us to work harder for DAND families.

In this series of blog posts, we will be detailing the results of the survey and its impact on the research community.