Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome is a group of 13 rare connective tissue disorders that affect the skin, joints, blood vessel walls, and organs. EDS is a genetically inherited condition. I was born with Hypermobile Ehlers-Danlos (hEDS), so that is what I will be discussing here.
(Hypermobility! Pro Tip: Don't do this.)
Common symptoms include:
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Overly flexible joints (hypermobility)
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Daily dislocations and subluxations
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these occur daily and degrade joints resulting in early-onset arthritis
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Fragile, easily bruised, and torn skin
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Dysfunction of hollow organs such as (but not limited to) the stomach or bladder
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Gastrointestinal distress (food intolerances, inability to absorb nutrients, chronic nausea/vomiting, acid reflux)
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Fatigue
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Brain Fog
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Headaches
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Insomnia
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Vertigo
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Weakened immune system
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Frequent infections
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(Beloved compression and dislocation gear. 1: back brace, 2: wrist stabilizer, 3: arthritic compression gloves, 4: hip/lumbar stabilizer Photo 2: compression socks and ankle stabilizer brace. What a normal day looks like!)
Chronic pain is by far the most prevalent symptom. This type of pain affects all joints, bones, and muscles often resulting in headaches and gastrointestinal pain as well. These symptoms are always present in some form.
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However, when we experience debilitating symptoms over a distinguished period of time, this is called a "flare-up". Many people with EDS including myself describe mild flares as "randomly feeling like you have a bad case of the flu" and the more severe flares often end in temporarily being bedridden or hospitalized.
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EDS is different for everyone but typically worsens with time. Some people experience fewer symptoms overall and have weaker flareups, going most of their lives not knowing they have EDS; they just know something is "off" hindering their quality of life. Others, like myself, were born with symptoms and comorbidities that rapidly multiply.
EDS comes along with many comorbid diseases, such as fibromyalgia and POTS (postural orthostatic tachycardia syndrome), which will be discussed in detail on the next page.
(Edvard Ehlers and Henri Alexandre Danlos. Thanks, lads!)
EDS has no disease-specific treatments or cures. It was only discovered in the early twentieth century by Danish dermatologist Edvard Ehlers (1863–1937) and French dermatologist Henri Alexandre Danlos (1844–1912). It has been highly neglected in medicine due to its presumed rarity, so little is known about it, and even less about how to treat it. Typically, providers knowledgeable about EDS focus on helping their patients manage their symptoms in a comfort-based care routine.
I have found that the most useful symptom management starts at home by modifying lifestyle choices such as:
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diet (eliminating inflammatory foods/high FODMAPs, multiple small meals, and/or appropriately spaced out meals)
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emphasize adequate hydration and electrolytes
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incorporating gentle movement (eliminate any stressors to joints, stomach, or cardiovascular system (e.g. too much HIIT) and exercise that enables hyperextension (e.g. yoga))
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comfortable clothing (loose natural fabrics, minimal to no buttons/zippers/ties, supportive shoes, compression wear, front-closing or elastic brassieres/undergarments)
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soft, supportive bedding and furniture
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mobility aids and modifying daily errands
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practicing mindfulness and acceptance (meditations and hypnosis are my favourite ways; YouTube is a wonderful source)
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Disclaimer: This information includes merely the basics and is not intended to aid in self-diagnosis or to replace professional medical advice. The reality of living with EDS is far more complicated and sometimes frightening, as the symptoms and comorbidities can shorten lifespan and cause sudden death in severe or untreated cases. However, the future of EDS-related medical research is bright, which means we are closer to winning the fight than ever. Properly educating yourself on the topic is the first step for EDSers and their loved ones alike.