The difficult to diagnose comorbidity that plagues Ehlers-Danlos syndrome patients

Do you find it challenging to find physicians knowledgeable about Ehlers-Danlos syndromes and hypermobility spectrum disorders? Us too!

Meet Julie Griffis, PT, and fellow zebra warrior.

Julie and I have walked a similar path. You may have walked this path too. We have been told that there is nothing wrong with us. We know what it feels like to be told your symptoms are all in your head.

In honor of EDS and HSD Awareness Month, Julie and I shared her story in a blog post for Kevin, MD, "Social media's leading physician voice". You won't want to miss this first ever Kevin MD editorial with Ehlers-Danlos syndrome in the title.

Will you join me in thanking Julie for sharing her experiences and writing this expanded version as a guest blog by sharing with your family, friends, and healthcare professionals?

-Linda Bluestein, MD

The difficult to diagnose comorbidity that plagues Ehlers-Danlos syndrome patients

Chances are, if you’ve heard of “dysautonomia,” it’s in relation to the buzz surrounding the recently identified post-COVID-19 syndrome. However, dysautonomia is not new. Patients with the multi-systemic connective tissue disorder Ehlers-Danlos syndromes (EDS) have long suffered with this elusive comorbidity which contributes to some of its most disabling symptoms. As a physician, you may be asking yourself, “Why should I be concerned with these mysterious conditions?” You may not know it, but it’s likely that you have at least one “difficult” patient in your practice right now who has undiagnosed EDS. Unfortunately, due to lack of awareness about this disease, and a clinical presentation of a constellation of seemingly unrelated multi-system symptoms, the average time it takes for a patient to be properly diagnosed is 10-12 years.

My name is Julie Griffis, and I am in the unique position of being both an EDS patient and a physical therapist. Unfortunately, even as a healthcare professional, it took over 20 years to be diagnosed which places me in the ever growing group of patients who wait decades for accurate diagnosis and effective medical management. May is “EDS Awareness Month,” and I’d like to share my experience to better help you recognize these frequently missed conditions in your patients.

I wasn’t aware of it at the time, but I have spent my entire adult life trying to tell my doctors that I was experiencing the debilitating symptoms of EDS and dysautonomia. As a patient, it has been frustrating trying to find answers and treatment for my debilitating symptoms. As a healthcare practitioner, I can understand how difficult it is to see how all these seemingly unrelated symptoms fit together. </