Ehlers-Danlos Syndrome is considered a rare disease. In the EDS community, there is the common belief it is more prevalent than thought, and it is more likely rarely diagnosed.
Often patients have multiple other diagnoses like Fibromyalgia, IBS, or others. Every specialist treats their part of the body; the body is rarely seen as a whole. Connective tissue is everywhere, so that we can have issues and symptoms everywhere.
I have encountered EDS in the ambulance. In 14 years of knowing about EDS and working in EMS, I have yet to meet a diagnosed individual. I have certainly met Zebras with “crazy” medical stories. One patient I will never forget. I admit she was a “frequent flyer or repeat customer”, not a friendly term. But bare with me; often, these people call us with their random medical issues at like 1.30 am, and of course, we medics aren’t happy to run on the same person for the same stuff repeatedly. Granted, some abuse the 911 system, but others may look like they do when they are just possible zebras.
Anyways, this patient was a sweet 90-some-year-old lady. The skin was like my grandma, velvety and soft, not dried out at all, a sign she cared for herself. She talked our ear off, over and over, with a medical history going back to childhood, before explaining why she called us. Through my multiple encounters, I started to get to know this lady.
She has 5 knee replacements, 3 hip replacements, multiple GI issues, tachycardia, lightheadedness, and a list of adverse reactions to medications probably longer than this post. I am guilty of admitting that I first brushed her off as lonely, needy, annoying …. (yes, I’m human, I’m sorry, and at times I’m probably burned out medic). Even so, I form my opinion about my patients; I always remain professional and give them the best care according to protocols.
All her symptoms, which I only listed a few, are linked to connective tissue. I am 99% certain that if she got adequately evaluated and tested, she would have an Ehlers-Danlos Diagnosis.
The good thing I also noticed throughout the years; a doctor having one EDS patient often starts to see the symptoms in other patients. When I was initially diagnosed at an Air Force Base (referred to UCSF Genetics), the doctors and case managers at the same Air Force Base paid attention. They identified at least 1 more person later diagnosed at Stanford University.
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