Ehlers-Danlos Syndrome (EDS) experts estimate that although current EDS diagnosis is around one out of every 2,500 to 5,000 people, the actual number of people living with EDS is much higher.
The syndromes can be misdiagnosed or undiagnosed for years because it presents itself in a variety of ways, often mimicking other conditions. To the untrained eye, EDS symptoms may look like unrelated symptoms, but show a clear pattern to an experienced EDS practitioner.
All the pieces of EDS
Nothing about EDS is common, but all symptoms point to a genetic defect in connective tissue.
Hypermobility — a common symptom in people living with EDS is hypermobility and extreme flexibility, often being called “double-jointed” along with hyperextension and dislocation of joints
Loose skin — fragile, elastic skin that tears and bruises easily and can be slow to heal
Joint Pain — typically severe joint pain
Gum Disease — gums are more prone to infection, inflammation and even recession
Mitral Valve Prolapse — the blood flow between the heart chambers is impacted because of weakened valves
Headaches — painful headaches or migraines are caused by muscular spasms in the temples or back of the head, circulatory constriction or dilation around the head, or displacement of the vertebrae
TMJ in EDS
The TMJ can become dislocated, as with so many other joints in the body of a person living with hypermobility and EDS. The dislocated TMJ creates a series of symptoms that can have a serious impact on an individual’s quality of life.
- Popping and clicking or grinding sensation in the jaw
- Pain and ringing in the ears
- Disrupted sleep
- Severe head, neck, back and arm pain
While an EDS patient will almost always present with TMJ and other dental and craniofacial problems, treating these issues is much different for a patient living with EDS. Finding a physician who is experienced and knowledgeable about EDS is the first and most important step to treating EDS and living with an improved quality of life. Visit the Ehlers-Danlos National Foundation (EDNF) for a physician directory, a member of the EDNF professional advisory network, about your concerns.