Our Mission
Dysunderstood aims to raise awareness and enhance education on complex and infection-associated chronic conditions (IACCs) like ME/CFS, Long COVID, and dysautonomia, while offering a supportive community for those affected by misunderstood disorders.
How we help
-
Provide connection between patients with misunderstood disorders that desire community with individuals with similar experiences.
Community Registry Coming soon!
-
Patient storytelling has been shown as an effective method of education. Our blogs, podcast, and conferences focused on the patient perspective serves to inform and empower providers and the community about misunderstood chronic conditions.
-
The Dysunderstood Podcast and @dysunderstood on instagram serve as awareness efforts in the media- easily shared and an avenue for promoting community members to foster connection.
-
Patients want to be heard, They want to be able to tell their story in their own voice. This is dysunderstood’s core value.
Founder.
Hi, my name is Ella Eastin. Most people know me for my athletic achievements in the sport of swimming. While, yes, I am a 4x American record holder, 12x NCAA National Champion and 5x USA Swimming National Team member, these accomplishments account for a small part of my identity.
I created dysunderstood to open up about my health challenges, including a battle with dysautonomia and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) after a COVID infection, that drastically changed the trajectory of my life.
My hope is not that dysunderstood will leave me more recognized than before, but lead to greater recognition of a whole community- those battling dysautonomia, chronic illness, and disability.
I wanted to create a place that allowed those of us with dysautonomia to have a voice. People deserve to tell their story the way they want it to be told. And our audience deserves to hear our stories from the source.
Dysunderstood in the media
-
Dysunderstood in the media -
The Dandelion Logo.
Dandelions are a symbol of strength, healing, hope, and perseverance- representative of everything that is required to live fully with chronic illness.
As the petals fall off a dandelion and blow in the wind, similarly, the message of dysunderstood will spread, land in new places and continue to grow.
New Resources Coming Soon!
