Ehlers-Danlos Syndrome
"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." I was then seen by a top pain management doctor who confirmed the diagnosis along with several other conditions. This explained decades of suffering that I had not previously understood.
EDS is a group of syndromes (13) which are genetic, heritable connective tissue disorders. Each type has its own features (I have hEDS, the hypermobile one), but some features may be seen across all types:
Joint Hypermobility - leads to sprains, injury, dislocation; joint instability causes acute and chronic pain.
Hyperextensive skin - can be stretched farther than usual; soft skin, easy bruising, slow healing.
Tissue Fragility - body's organs and other structures more vulnerable to damage; poor wound healing.
Poor Proprioception - prone to accidents, bruising.
Pain - unresponsive to OTC drugs
The EDS patient usually has a host of other conditions/comorbidities:
POTS (Postural Orthostatic Tachycardia Syndrome)
MCAS (Mast Cell Activation Syndrome
Chronic fatigue
Despite these conditions, those with EDS can look perfectly fine; in fact, their soft skin makes them look younger. EDS sufferers are called "Zebras." For more info contact the Ehlers-Danlos Society website. I've also provided a PDF below with helpful resources in dealing with these health struggles.
We made good use of the beach wheelchair at East Matunuck, RI.