I just witnessed the true power of the community of patients and their supporters I’m in. We call each other Zebras. We are a medical rarity usually dismissed by doctors who see us as the most common denominator – not the rare beasts we are.
I’ve spent the past year plus gathering, polling, surveying, interviewing and asking other people their insights and opinions on how to best live your life with invisible chronic illness, especially hypermobile Ehlers Danlos syndrome (EDS) and its comorbidities like dysautonomia. The culmination of that work was recently launched in my book Holding It All Together When You’re Hypermobile.
The response was so phenomenal that other zebras acted fast to scoop up their copy raising the new release to the #1 sales rank within 48 hours on Amazon.
While I gifted over 800 copies to fellow patients, I achieved more than my goals in the first few days after the launch- by really helping people. The feedback from the community of readers is highlighted here LINK. Several patients, expert doctors, and researchers at the annual EDS Society conference recently asked me if I could assist to get the word out and I’m eager to help. Check out my website at www.holdingitalltogether.com for the list of experts and advocates I had the privilege of interviewing for the book.
But what I’m coming to understand more than I realized is the desperate need for people to be heard, understood, and no longer dismissed by the uninformed medical community. I had the opportunity to interview EDS experts who get it and help us. To the remainder of you in medical training, practicing professionals, therapists, PTs, and more- please --hear our roar!
If over 1,000 people responded to access for resources on this invisible and often misunderstood disorder of EDS within hours without any promotion or marketing effort- isn’t that telling? What will it take to turn your head to see us? Is it scientific evidence of our disorder, check, MUSC and the Norris Lab have that coming. Is it a demonstration that we are NOT rare and ‘enough’ people are afflicted to change the game? Check, yes we have that in spades as evidenced by the thousands who even know where to go to get information and paid to learn more about EDS at the conference. Scientists currently believe hypermobility affects at least one in every 500 people. That’s millions of us around the globe! How can we speak louder when we are trying to hard to live with a chronic illness?
I hope to continue the momentum and I’m personally committed to bringing useful insights to the community as are many others personally affected by EDS. Doctors like Dr. Zingman, nonprofits like EDSAwareness.org and so many more. I am grateful to all of you helping to spread the word. I believe together we are forming a movement. One of caring and compassionate healthcare - even if we have to crowdsource it ourselves! #crowdsourceyourcare
I’ve set up a survey to learn how I can next serve the growing zebra community with a living body of knowledge in the most efficient and effective way. My book was out of date the second it was published. So what’s next…is it an app, a newsletter, a challenge, viral video? How can we get the world to recognize our stripes? How can we create a joint effort with doctors, advocates and the patients in the community to share resources easier? I’m looking for ideas! If you will, please go to https://www.surveymonkey.com/r/hEDS to share your opinion on how you need to be heard, understood, and have access to more information.
For all my Zebra friends, may wellness be contagious! You never know who is to the right or the left of you who might need help.