Extraordinary joint flexibility may foreshadow unexpected trouble in the lungs.
Because connective tissue runs through nearly every organ, when it “is weakened or unstable,” Taylor Goldberg, a hypermobility coach based in Colorado, told Newsweek, it “can affect breathing mechanics and airway stability.”
“Anecdotally, many people with Ehlers-Danlos Syndromes (EDS) seem to have more difficulty recovering from respiratory illnesses,” she added.
EDS is a group of genetic conditions that weaken the body’s collagen “glue.” Skin stretches farther, joints bend too far and sometimes dislocate, and internal tissues bruise or tear more easily. People may have chronic pain, fatigue or dangerous blood‑vessel ruptures, so careful monitoring and joint‑protecting exercise are important throughout their lives.
What Is Hypermobility?
“Hypermobility is the ability to move your joints beyond what is considered a normal range of motion for an average person,” Jeannie Di Bon, a U.K.-based hypermobility and EDS specialist told Newsweek.
“Just because you’re hypermobile, it doesn’t mean there’s anything wrong with your connective tissue, it doesn’t mean you’ve got a syndrome, but it can become symptomatic through a trauma,” Di Bon said, pointing to various illnesses and traumas.
“All of a sudden, hypermobility that wasn’t really bothering you suddenly becomes very problematic, often overnight for some people,” she added.
It’s when someone has symptomatic hypermobility that you’d investigate if they have a connective tissue disorder, such as EDS, Di Bon said.
One Easy Test To Determine Hypermobility
Hypermobility is often gauged with the nine‑point Beighton Score, which awards one point per side for five maneuvers: bending the pinkie back 90°, touching the thumb to the forearm, hyper‑extending elbows or knees more than 10°, and placing palms flat on the floor with straight knees.
A score of more than five out of nine, for an adult, indicates a person has hypermobility. For a child, it would be at least six out of nine.
This score alone does not confirm EDS. A hypermobile‑EDS diagnosis is “based on a checklist where the patient meets certain criteria, including a Beighton score level,” Dr. Bernadette Riley, director of the Ehlers‑Danlos Syndrome/Hypermobility Treatment Center at New York Institute of Technology’s College of Osteopathic Medicine, told Newsweek.
The Beighton Score is “helpful in the right context but should always be part of a bigger clinical assessment,” Goldberg said. “Just having symptomatic hypermobile joints isn’t enough to diagnose EDS—you also need systemic signs, a clinical history, and in some cases, genetic confirmation.”
Why Those With EDS Can Be More Susceptible To Respiratory Issues
While there is limited research on EDS, breathing pattern disorders have been found among patients. A 2022 study published in Respiratory Medicine and Research found that almost 85 percent of EDS patients had signs of respiratory problems.
Riley said that a systemic review she worked on showed “hematomas, hemoptysis, obstructive sleep apnea (OSA), and pneumothorax as some respiratory complications seen” among EDS patients.
“While we need more formal research, clinical experience suggests that people with EDS might have a harder time with respiratory illnesses compared to the general population,” Goldberg said.
Di Bon, who has EDS herself, said she’d had pneumonia multiple times, as well as COVID-19 four times, and she attributed this to her not “breathing well” due to EDS.
People with EDS can hold their inward breaths for too long in a form of “bracing,” she said, as “it’s a subconscious way of trying to be stable, because we lack stability.” Despite it “not being functional or healthy,” she said, this bracing form of breathing is very common.
This means a patient is likely “holding all their tension up and breathing here,” Di Bon said, gesturing to the very top part of her chest, “and their shoulders are up to their ears and the diaphragm isn’t moving and they’re not even aware that they’re doing that because that’s how they’ve always breathed.”
This way of breathing could make those with EDS more susceptible to respiratory diseases like COVID-19 and pneumonia, Di Bon said, because the lowest parts of their lungs often remain inactive — a “breeding ground” for infections due to the lack of movement.
There is also an emotional element to it, Di Bon added, as a lot of EDS patients have “had trauma, medical gaslighting, trying to find help and not getting help, so stress, anxiety, tension all starts to impact someone’s breathing.”
Mental health conditions are also widely reported among EDS patients. A 2022 study also found that almost half of the EDS patients surveyed had depression and over half had “probable” anxiety.
However, EDS is a multi-systemic condition, and not every patient will have respiratory issues. As connective tissue disorders affect so many parts of the body in various ways, every patient’s experience of it is very different.
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