LIKE SO MANY with this largely unknown, genetic connective tissue disorder, I was diagnosed after decades of suffering constant pain and the added grief resulting from multiple misdiagnoses, ill-matched therapies, and incurious doctors. Learning in July, 2020, that I have EDS was an amazing moment, as I'd been without answers, bouncing from doctor to doctor, since my 20's. One top Dallas doctor had quipped, "you have Jennifer Baker Disease." Ha! Thanks. Helpful....
After many years of failure, I quit the typical therapy routes and limped along by myself, finding better help from alternative medicine. Then in 2017, I injured my ankle severely, and despite seeing another long line of doctors and therapists, never could seem to heal. By January 2020, I was in unbearable pain, exhausted, and losing my mind.
EDS explains my being prone to accidents due to poor proprioception (so that's why I've broken so many bones and am forever walking into things!), explains the random bruises, the weak and easily sprained ankles, the slow healing, and the strange pain in my limbs unresponsive to OTC medication. EDS and its comorbidities explain why I never can keep up energy-wise with my peers, why exercise is so difficult, and why sports - though I'd love to play - just aren't for me. Finally having an explanation for these perplexing experiences is such a relief, as one thinks herself crazy when no one can identify the problem. "Well, you look good!" Thank you! (but...I feel like garbage...).
EDS often comes along with POTS (Postural Orthostatic Tachycardia Syndrome), Mast Cell Activation Syndrome, digestive issues... and more. Following the relief of having answers I became overwhelmed, as there is no sure fix and management can take years to figure out. A long list of specialists, drugs, and therapies was handed to me. I felt my health journey was just beginning... again.
It was after yet another painful, failed, physical therapy attempt that my observant naturopath said, "I think you may have Ehlers-Danlos Syndrome." "Ellers what?" It was soon after confirmed by a specialist.
My diagnosis came at age 45 which, of course, is super young...... :) but an awfully long time to live with a genetic disorder and not know it! In 2019, I endured ankle surgery which only compounded my pain and suffering. I'm still not able to walk freely in large part due to that, as well as the multiple, harmful PT sessions preceding it. My story may spare others similar grief.
I have so enjoyed teaching and performing for the past eight years, but am now going to focus on being a freelance musician so that I can find a greater degree of health. My new projects have many starts and stops as I nurse an unhappy body, but I'm grateful to be able to play at all! Between my mid-20's through late 30's I had debilitating pain just from touching the keys. Through much trial and error, through persistently trying whatever I thought might help, and by God's grace, I have learned (I think!) how to avoid that. I hope to encourage Zebras who may be thinking "life is over," to press on.
Have you seen a Zebra?
Those who have EDS can look perfectly fine. Their soft skin often makes them appear younger looking than their peers. I've heard stories of Zebras getting dirty looks for parking in the handicap spot, as their challenges are often unseen. Why the Zebra? See the short video below.
In addition to medical intervention, I find the gentle, holistic approach of naturopathy to be an important part of my healthcare. Through my health trials, Samaritan Ministries has been tremendously supportive. The notes we receive from people all across the country who belong to this unique community touch us deeply.
There are many subtypes of EDS. I have the most common one, hypermobile type, or hEDS, but symptoms vary from person to person. To learn more about EDS and to discover helpful resources, please visit The Ehler's-Danlos Society website.