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  • Writer's pictureKaydee Zimmern

Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorder, and Invisible Illnesses

Imagine you see a person getting out of a parked car from a marked disability spot. You see her walk into a store, with what appears to be no problem and wonder how on Earth they have a card to park there. If that person would have used a cane or a walker, it might have been more obvious. Many people do have a recognizable, visible disability; however some people suffer with non-visible illnesses whose daily lives are affected just as much as those with more obvious challenges.

May was Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month. There are 13 known EDS types in total and a set of diagnostic criteria that an individual needs to meet for an official diagnosis. The most common type of EDS known as hypermobile Ehlers-Danlos Syndrome (hEDS) accounts for 90% of cases. hEDS is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain. People with hEDS may also have mild skin hyperextensibility, abnormal scarring, chronic fatigue, GI issues, dysautonomia, headaches, and mast cell activation diseases. hEDS involves flares of the above symptoms which can result in difficulty getting through day-to-day activities and/or in school or work environments without accommodations.

There may be days where people with hEDS need to use a mobility aid, and/ or braces, or have their joints taped. There may be days where none of those items are needed. On the surface, people with hEDS may be seen socializing, or at work or school appearing to be fine. However, that could not be farther from the truth. I surveyed my patients and the majority said that most people do not see the pain and fatigue they carry from day to day. This can even affect their quality of care; people with hEDS may seem normal from an outside perspective, and thus are often brushed off by medical professionals. Some have even been told, “it's all your head.” This affects both mental, emotional, and physical health. With the variety of symptoms that a person with hEDS has, it’s important to have a variety of health care professionals on your clinical care team from geneticists to cardiologists, to mental health counselors to an allergist. That’s to only name a few. Physical therapy and pain management strategies are crucial for lifelong support for those with this chronic illness. As with many other people suffering from chronic illness, it is important to note each individual with hEDS is truly an individual. No two people will present alike in their symptoms. That’s why the symbol for EDS and HSD is a zebra: just like no two zebra’s stripes are alike. If you are suffering from this condition or others like it, we want you to know that you’re not alone and that there is help available.

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