Ehlers-Danlos Syndrome is an oft-missed diagnosis. Many people may be suffering from EDS or other Hypermobility Spectrum Disorders (HSD) and not be aware of what root cause is of their pain or symptoms. May was designated EDS and HSD Awareness Month to bring light to this under-diagnosed disorder.
EDS is a group of inherited disorders that affect connective tissues. There are 13 types, with Hypermobile EDS being the most common. This is also referred to as EDS—Hypermobility Type. Connective tissue provides strength and elasticity to the underlying structures in your body. The collagen and certain allied connective tissue proteins do not function the way they are supposed to, affecting the person’s skin, joints, and blood vessel walls.
The most common symptoms of EDS are overly-flexible joints and stretchy or fragile skin. The connective tissue that holds joints together is looser, causing the person to be hypermobile. This hypermobility allows them to move joints past the normal range of motion and can cause frequent dislocations as well as joint pain. Other possible symptoms are joint instability, scoliosis, joint deformities, extremely stretchy skin, abnormal scarring, structural weakness, brain fog, fatigue, and allergic skin reactions. Most people with Hypermobile EDS have very soft, velvety skin.
EDS is often missed in a patient because its symptoms can mimic Lyme Disease, arthritis, sports injuries, and assorted illnesses. Many people are told incorrectly that they have fibromyalgia. Others don’t seek treatment, not connecting their symptoms and realizing that there may be an underlying cause. A great website for information on EDS, or to donate to research and education, is www.ehlers-danlos.com, run by the Ehlers-Danlos Society.
The “mascot” for EDS is a zebra. According to the Ehlers-Danlos Society, the reason for this is twofold. First, it is the “unexpected” diagnosis. They relate this to the fact that if you hear hoofbeats behind you, you think it’s a horse, but you could turn around and be surprised to see a zebra. The second reason is that just like no two zebras have identical stripes, no two EDS patients have exactly the same symptoms, making diagnosis more difficult.
Currently, there is no cure for EDS. Depending on the variety and extent of symptoms, people with EDS try to improve their symptoms with low-impact activity such as swimming, physical therapy, calcium and vitamin D supplements, pain management, and when needed, braces, KT tape, or assistive devices. If you think you are a loved one who has EDS, call around to find an EDS doctor (very rare) or an EDS-informed geneticist, neurologist, or rheumatologist. A doctor who is familiar with EDS can perform a physical exam to see if you match the criteria for diagnosis. Of the 13 types, 12 can be identified through genetic testing. Unfortunately, they have not yet identified the markers for the most common type, Hybermobile EDS, so that needs be diagnosed by physical examination. Researchers think that are close to developing a genetic test for hEDS.
There is a global learning conference this summer from August 4-6 that can be attended virtually. You can register here 2022 Global Learning Conference in Scottsdale, Arizona! The conference theme is “EDS and HSD Through a Lifetime” and will feature presentations, case studies, and panel discussions led by experts on the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The event is suitable for community members and their friends and families, as well as healthcare professionals who are interested in learning from a lay perspective.