About the Dallas EDS Support Group
Welcome to the Dallas EDS Support Group!
Find Good Doctors for EDS Zebras in the DFW Area
Our primary purpose is to connect Ehlers Danlos Syndrome, POTS, and Mast Cell Activation Disorder patients with good doctors in the Dallas-Fort Worth Metroplex area.
However, we are also a source of information and social connection. Periodically, we’ll host interactive webinars, online live social videoconferencing events, and in-person get-togethers.
Join the DFW EDS Support Community
Join us on Facebook, Twitter, www.edsdallas.com, or contact us via the form on this site.
We are most active on Facebook, where our doctor referral bank resides. If you’re on Facebook, we invite you to join our private, closed group where you can engage with fellow zebras and exchange tips and tricks for living with EDS.
Click here to learn more about the various ways you can join our community.
EDS-Aware Doctors Matter. We are Zebras, not Horses!
Early on in medical school, doctors learn a saying that goes like this: “When you hear hoofbeats behind you, think horses, not zebras.” In other words, doctors are trained to recognize and diagnose common conditions, and often it doesn’t cross a doctor’s mind to consider diagnoses that are considered to be rare. Moreover, very few doctors are familiar with the ins and outs of EDS because it is not a condition that is extensively studied in med school. That’s why it’s so important to see a doctors who are EDS Aware.
Although EDS is currently considered rare, our favorite local Dallas Geneticist, Dr. Golder Wilson, estimates that in reality, EDS is far from rare. And yet, so many patients we’ve encountered describe horrific experiences with doctors who don’t know what EDS is, doctors who think they know what it is but refer to the syndrome as ED (uh, no!), or who refuse to believe that EDS exists at all!
Ehlers Danlos Syndrome is a Physical Condition, not a Mental Illness
Worst of all are the horror stories from EDS patients who have repeatedly been referred to psych when in fact their symptoms are very physical, and very real.
Dr. Wilson is actively working to educate the medical community about EDS and its wide array of symptoms, emphasizing that the symptoms are caused by physiological factors rather than psychological disorders. He refers to EDS as AAD-EDS, which stands for Articulo-Autonomic Dysplasia-Ehlers Danlos Syndrome, because he believes it is more descriptive of the whole spectrum of symptoms EDS patients exhibit, including autonomic dysfunction.
Making the clinical diagnosis of AAD-EDS relates diverse symptoms to one cause and emphasizes that the frequent depression that accompanies chronic joint pain/activity restriction and the anxiety from POTS are medical and not psychiatric symptoms. Patients are no longer viewed as having psychiatric disorders and symptoms no longer thought to be “in the mind,” paving the way for focused medical evaluation and effective treatment.
Once the underlying AAD-EDS physiologic relationship is recognized, the symptom pattern is easily discerned: Early colic/reflux or failure to thrive (heralding IBS), hypermobility/joint laxity not always recognized as unusual, early joint pain (growing pains more usual at night), frequent subluxations-sprains-ligament tears-fractures-disc herniation/degeneration, IBS with chronic constipation-diarrhea-nausea-even anorexia in older children/adults, stretchy skin with easy bruising-scarring-slow healing, heavy periods-endometriosis-pelvic collapse in females, migraines-daily headaches-posterior/pressure headaches of Chiari deformation, dizziness on standing-syncope-chronic fatigue-brain fog-tachycardia-anxiety-panic attacks-salt fancy of POTS, and transient rashes-hives-asthma-medication/food intolerances of MCAD.
If you are seeking an EDS diagnosis and live in the Dallas-Fort Worth area, we urge you to contact Dr. Wilson. You don’t need a referral. Simply contact his office and ask to schedule an appointment for an EDS diagnostic evaluation.
Journey with Us!
Join us as we share knowledge with each other and work to improve the treatment experience for all EDS Zebras in our area. The Dallas EDS Support Group is the perfect place to share and learn information, find good doctors, and build a social support network. We look forward to connecting with you!
