September 2024

Voices of Strength: MyPaTH Story Booth and Autoimmune Registry Unite to Share Patient’s Journeys

Autoimmune diseases are becoming more common in recent years. Although individual instances of autoimmune diseases can be quite rare, collectively, this class of disease is highly prevalent in the United States, affecting over 20 million individuals. While case numbers are increasing, the complex nature of these diseases can make receiving a diagnosis challenging. Furthermore, there is a lack of public awareness. As a result many individuals silently suffer and do not receive the help that they need.

The MyPaTH Story Booth has partnered with the Autoimmune Registry to create a platform that allows individuals with autoimmune diseases to share their unique experiences as they navigate their diagnosis. Sharing these lived experiences can inform patients, their families, clinicians, and researchers while also raising awareness.

Aaron Abend is the executive director of the Autoimmune Registry. Motivated by his mother’s experiences within the healthcare system as she struggled to receive a diagnosis for an autoimmune illness, Aaron embarked on a mission to establish this registry which was modeled after the National Cancer Registry. Reflecting on the importance of this collaboration, Aaron notes, “There are 2 misconceptions that people often have about autoimmune diseases. The first is they tend to think that people with autoimmune diseases are old. Second, they think they should look sick. [However], the typical autoimmune disease patient [may be] a young, healthy-looking woman in her 30s. [T]he pain and fatigue that accompanies so many of these diseases is invisible. We all know someone with autoimmune disease – but the people suffering from them do not always look the way we’d expect. The Story Booth program provides a window into the lives of these patients so their suffering is better understood”.

You can explore this Special Collection of stories and learn more about the Autoimmune Registry on the MyPaTH Story Booth website. We hope these stories will increase visibility and understanding of the challenges these patients face and offer support to others who may be experiencing similar journeys.