Hypermobile Ehlers-Danlos Syndrome (hEDS)

Hypermobile Ehlers-Danlos Syndrome (hEDS) is a connective tissue disorder characterized by generalized joint hypermobility, skin hyperextensibility, tissue fragility, chronic headaches, and much more. It is a multi-systemic condition, affecting many areas of the body at once– one of the reasons it makes it difficult to diagnose and easy to mimic other conditions or hide behind an other diagnosis or illness. Multiple genetic disorders are often associated with it, along with diagnoses of POTs, MCAS, and dysautonomia. There are 13 recognized types of EDS, many being diagnosed by a single genetic mutation. You can read a full break down of each on the Ehlers Danlos Society website.

Connective tissue is the 'glue' of the body, which is why many types of EDS are also associated with double-jointed or extra flexibility. However, just having one of these does not automatically mean you have a form of EDS, but it does wager looking into it further particularly if other symptoms are present with no answers.

Since effects can lead to widespread multi-systemic issues, discovering which type of EDS you have and finding a supportive system of medical professionals from physical therapists, doctors, geneticists and EDS specialists who fully understand your type of EDS through a holistic lens, will bring the highest quality of life overall.

hEDS until recently was thought to have no known genetic connection. However, a genetic breakthrough by researchers at Boston University found that hEDS patients have a higher burden of genetic variations (differences) spread across three key areas in the body:

• Collagen Pathways - skin, joints, tendons, arteries, strength
• The immune System – inflammation, immunity
• Mitochondrial Function – energy on every level

hEDS is now confirmed to have multiple rare genetic variants working together rather than a single "hEDS gene.” This explains why it was difficult to trace down and diagnose, due to the large array of varying symptoms from patient to patient. This new discovery is encouraging, with so much research being put into hEDS continually bringing more knowledge of how to support those suffering from it.

It is vital to find professionals who understand the genetic components of any type of EDS, especially hEDS, supporting the nutritional elements, detox pathways, dysregulation, and inflammation where the body of someone with hEDS cannot do on its own. Understanding and supporting properly, can make the difference from bedridden to thriving.

Finding resources and communities who can resonate with you is important. This condition can feel so isolating, hidden, and difficult to explain. Many patients look normal, and may be very athletic and good at sports. This condition isn’t a sentence. If you or a loved one is diagnosed with hEDS or any type of Eds, it is a piece of your puzzle, bringing you a giant leap closer to better health.