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Ehlers Danlos Syndrome Diagnosis

Patients with Ehlers Danlos Syndrome are often times misdiagnosed, mistreated, and overlooked BEFORE their diagnosis. I was diagnosed at a very early age, and was incredible lucky!! At 7 years old, I was officially diagnosed with Ehlers Danlos Syndrome and Tethered Cord Syndrome. My incredible nephrologist was the first physician to suspect that I had Ehlers Danlos, and quickly referred me to a geneticist.

{ this is a photo of me at the age of my diagnosis }

Many physicians check patients skin elasticity, overall flexibility, family health clues, and many more things to give them an idea of whether a patient has EDS or not. Genetic Testing helps physicians to rule out/further diagnose the patient with one of the many EDS subtypes.


In a study I recently read, 70% of the patients included were misdiagnosed and received incorrect treatment before their proper EDS diagnosis. Some of the incorrect treatment was psychological AND surgical! This can cause extreme mental health consequences for the patient, and further anxiety around the healthcare world in general. Regarding a formal diagnosis—the study I read explained that a diagnosis took on average, 14 YEARS after the onset of symptoms.

Ehlers Danlos Syndrome patients are overlooked, misdiagnosed, and often times turned away. We need to encourage doctors and physicians to look outside of the box, and help patients that need it the most. 🦓🖤🤍

*study linked here*

https://www.eurordis.org/IMG/pdf/voice_12000_patients/DIS_Ehlers_Danlos_Syndrome.pdf

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