"ELLER'S WHAT??" It was after yet another painful, failed, physical therapy attempt that my observant naturopath said, "I think you may have Ehlers-Danlos Syndrome."
EDS is a largely unknown (but far more common), 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, for over twenty years.
EDS is a group of syndromes (13) which are genetic, heritable connective tissue disorders. Each type has its own set of features, but some features may be seen across all types:
* Joint hypermobility - leads to sprains, injury, dislocation; join instability can cause acute and chronic pain.
* Hyperextensive skin - can be stretched farther than usual; soft skin, easily bruised, slow to heal.
* Tissue fragility - body's organs and other structures more vulnerable to damage; poor wound healing.
EDS explains my being prone to accidents (poor proprioception), the random bruises, the weak and easily sprained ankles, the slow healing, and the strange pain 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 (sports impossible), and this fuzzy brain that struggles in conversation.
The EDS patient usually has a host of other conditions. For me, it's POTS (Postural Orthostatic Tachycardia Syndrome), Mast Cell Activation Syndrome (MCAS), and chronic fatigue. Those with EDS can look perfectly fine. They often have soft skin which makes them look younger. I so often hear, "You look great!" Thank you, but...I feel like garbage....
Ehlers-Danlos sufferers are called Zebras...
Have you seen a Zebra?
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.