About

Mission

To collect useful information about living with Ehlers-Danos syndrome and its co-morbid conditions and to share my experience searching for a better life. 

Values 

  • Embracing real and metaphorical “crutches” 
  • Acceptance of differences 
  • Forming a partnership with illness and disability as opposed to “battling it” 
  • Cultivating a mindset that moves towards love 
  • Respecting an individuals right to choose healthcare options 

Want to get involved ? Send in your writing to weembracethebrace@gmail.com 


Original Plan [April 2017]

I’m on a mission to find and define a treatment guide for EDS. This treatment guide is based on ways to manage and cope with the effects of EDS in daily life. The treatments I’m exploring focus on changing one’s lifestyle and environment to match the needs of EDS. As opposed to changing or fighting the EDS itself, I’ve learned to accept it, acknowledge it, and work with it.

My goal is to prevent future problems and learn to live within the context of my current symptoms. I’m working on summarizing my findings in a book and taking a deeper look at the psychological wounds of EDS. In the meantime, I’ve come across many products, practices, and lifestyle modifications that are vital to my day to day survival. I want to share this information with the EDS community as soon as possible, so I created this blog! This is in an attempt to curate all useful information regarding how to feel better and how to function better with Ehlers-Danlos Syndrome.

lifestyle tips, products reviews, inventions, ergonomics

I hope this information helps you find at least one more way to have a better day today!