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5 HUGE Misconceptions About Ehlers-Danlos Syndrome

Updated: Dec 20, 2023

5 HUGE Misconceptions About Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is not a simple diagnosis. We at Actify know this firsthand as we have two people with EDS on staff, including our Physical Therapist Dr. Marcia Perretto. We know all about misconceptions that can run rampant in the medical community and we’re here to put an end to that. We are not like most providers who don’t have time to keep up on research for one diagnosis with a wide variety of presentations. We can’t live without staying up to date! And so we want to pass off some of our own learning, hoping that one less EDS patient will suffer when they are better equipped with this knowledge.

So here are 5 misconceptions surrounding Ehlers-Danlos Syndrome that we would like to put to rest:

1. Patients fit neatly into one type of EDS

In case you didn’t know, there are multiple types of EDS. Currently, they are classified into thirteen subtypes, each with a set of clinical criteria that can help guide a diagnosis. So it should be easy to fit our symptoms into one neat box, right? We wish. A 2015 UK genetics study of 177 unrelated patients found 7% of cases had a phenotype overlapping multiple EDS types not falling into one specific EDS type and were deemed “complex EDS.” So if you don’t see your symptoms fitting simply into one type, or you have symptoms across multiple types, don’t panic! There are still many resources out there for you. With the right treatment, and an understanding care team, you can live a happy and full life – free from EDS pain.

2. EDS patients have flat feet. High arches mean you definitely don’t have EDS

Flat feet is a well advertised aspect of EDS. Yet, we at Actify have encountered a number of EDS patients with a high arch. Just because you have a high arch does not disqualify you from having EDS. Your care team should be looking at all of the symptoms and not dismiss EDS simply because of a high arch.

3. An EDS diagnosis requires family history and a geneticist

This misconception can be very damaging and hurtful to EDS patients, especially in the U.S. where many people in the medical community are under the belief that only geneticists can diagnose EDS. A specialist is not required to diagnose EDS as, at this time, EDS is a clinical diagnosis. Doctors do not need to be afraid to diagnose EDS. Some people may not be able to provide a family history or genetic comparison, making the process even more frustrating. You should not have to fight for a diagnosis or the correct medical care.

4. Fatigue is not a common symptom of EDS

Fatigue is arguably the most common symptom of EDS, along with pain. From the patient perspective, chronic fatigue in EDS can be even more debilitating than chronic pain, severely impacting quality of life.

5. “It’s just a name and it doesn’t matter what you call it”

Here at Actify, we disagree with this statement, and in some situations, such as having surgery or even in receiving referrals and appropriate treatment, having the proper diagnosis does matter. When it comes to validating a person’s experiences and working towards a solution, naming the problem can be one of the biggest steps a person can take towards healing. So the name matters. Having an answer matters. And being able to understand and accept treatment matters.

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