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Please Stop Using “Lived Experience”
Why the Phrase “Lived Experience” Doesn’t Sit Well With Me In the world of rare disease and chronic illness advocacy, certain phrases catch fire fast. They show up in research papers, nonprofit materials, conference presentations, and patient engagement efforts. Everyone starts using them. And somewhere along the way, nobody stops to ask whether they’re actually…
When Your Mind Feels Different: Brain Fog, Cognitive Changes, and Personality Shifts
Brain fog. Forgetfulness. Personality changes. These are among the most unsettling symptoms people with rare diseases can face — and yet, they’re often brushed aside or misunderstood. I’ve watched my wife, Sarah, experience all of these, and I’m here to tell you: they’re real, they matter, and they deserve attention. Cognitive and personality changes can…
Brain Fog with Chronic Disease is Not A Myth
We hope this article, written by the person who works with Community Engagement and lives with EGPA, will help you feel less alone with brain fog! This article was published on ANCA Vasculitis News in the column, Truth Be Told. Check it out and subscribe to ANCA Vasculitis News!BRAIN FOG WITH CHRONIC DISEASE IS NOT…
Personalized Quality Of Life Tool
Explore the Quality of Life Tool designed for people with rare and chronic conditions. The tool can be found below as well as a recording of a livestream that walks you through how to complete and use the tool to improve your care coordination with your provider.
Intimacy In The Context of Chronic Illness
This topic is literally the last thing on anyone’s mind who has a chronic illness and/or rare disease. ERDC’s most recent survey results prove this. Out of 8 items that include feeling safe from disease crisis, autonomy, physical ability to do ADLS… it’s not surprising that concern with intimacy is the lowest score. Recently, we…
