You’re Not Alone in the Tough EDS Diagnosis World

Anger. Who doesn’t get angry? From big to small stressors in life, there are far far far too many triggers to choose from that can set us off.


But, what if the scenario played out as one of a misdiagnosis? Life moves along as it does, and then it happens—symptoms arise. Maybe it’s hereditary? Maybe it’s age onset? Maybe it’s exposure to something or someone? Maybe. Maybe. Maybe. The one health status certainty is this: “Yesterday I felt fine, but today, I have symptoms.” The “whys” add up, and the search for answers begins.

Just like the equation for one young woman—a journey where she possibly lived with undiagnosed Ehlers-Danlos syndrome (EDS) for more than 10 years. Her story transcends my trite talk of anger. It’s quite unbelievable and a must read for you, so click here.

Here’s the dilemma for people living with Ehlers-Danlos syndrome:

EDS is sometimes quite difficult to diagnose. It is usually suspected because of the typical symptoms. At the present time, EDS is not curable, but it is treatable. Early diagnosis is important. When patients and their medical team know what they are dealing with, they can determine the proper course of treatment, therapy, and lifestyle adjustments necessary to build a healthy, happy, and productive life.

Did you catch the glitch? Difficult to diagnose vs. early diagnosis is important.

That’s a catch 22 for sure—a frustrating situation in which one is trapped by contradictory conditions. A dilemma that incites a number of emotions, and unfortunately, anger may be at the forefront.

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