Swallowing issues may complicate meals, daily life for people with hEDS
Small study finds dysphagia may occur with GI problems and dysautonomia
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Difficulty swallowing, or dysphagia, can be a significant problem in hypermobile Ehlers-Danlos syndrome (hEDS), and may occur alongside gastrointestinal issues that can require supplemental or alternative nutrition or hydration, according to a small U.S. study.
Dysphagia appeared to be related to underlying hEDS symptoms and related conditions, including gastrointestinal issues and dysautonomia — a dysfunction of the autonomic nervous system, which controls involuntary body functions like heart rate, digestion, and breathing.
“Dysphagia is commonly reported by people with hEDS and appears to be related to underlying symptoms of hEDS and/or dysautonomia,” the researchers wrote. “Further research is needed to elucidate the impact and mechanisms of impairments associated with hEDS and dysautonomia across all phases of swallowing.”
Swallowing problems in hEDS remain understudied
The study, “Patterns of and Experiences with Dysphagia in People with hypermobile Ehlers Danlos Syndrome (hEDS) with or Without Dysautonomia – A Qualitative Study,” was published in the journal Dysphagia.
hEDS is the most common type of EDS, a group of genetic conditions that affect the connective tissue, which helps support and provide structure to skin, joints, blood vessels, and organs. Common symptoms include joint hypermobility, or unusually flexible joints that can dislocate easily, along with soft, fragile, or unusually stretchy skin.
People with hEDS, however, may also experience a range of other symptoms, including gastrointestinal and heart problems, breathing difficulties, and neurological issues. Many of these symptoms can occur with related health conditions that affect daily functioning, including dysautonomia.
One of the most common forms of dysautonomia is postural orthostatic tachycardia syndrome (POTS), which causes an abnormally rapid heart rate upon standing. In people with hEDS, POTS has been linked to reduced or abnormal motility (dysmotility) of the esophagus, the muscular tube that carries food from the mouth to the stomach, as well as acid reflux, both of which may affect swallowing.
A preliminary review of medical records found that approximately 14.9% of people with EDS had a diagnosis of dysphagia, and that the rate rose to about 18.4% among patients diagnosed with both EDS and dysautonomia. However, the researchers noted that “there is currently a paucity of research on the prevalence, impact, physiology, and variety of dysphagia presentations experienced by people with hEDS.”
Study explores how hEDS affects eating and drinking
To learn more, a team of four researchers conducted a small qualitative study of 10 adults with a hEDS diagnosis. Participants were recruited across the U.S. through the Oregon Health & Science University (OHSU) Northwest Center for Voice and Swallowing, research databases, advocacy organizations, and social media.
Participants first completed questionnaires about their demographics, swallowing symptoms, and reflux symptoms. They then took part in a virtual guided interview focused on their experiences with swallowing and breathing in different situations.
Participants ranged in age from 19 to 52; most were female, and eight had POTS. All reported symptoms of dysphagia, and most also reported reflux symptoms.
Nine reported using supplemental or alternative forms of nutrition or hydration, either currently or in the past. Six had required feeding tubes at some point, while others relied on dietary or vitamin supplements, liquid diets, or intravenous (into-the-vein) nutritional support.
From the interviews, the researchers identified four main themes related to dysphagia in hEDS.
The first theme was that swallowing discomfort was common and required substantial mental and physical effort. Participants described food or pills frequently becoming stuck in their throats, as well as needing to focus carefully while swallowing to avoid choking.
“There’s a lot of discomfort in the back of my throat when I’m continuing to try to swallow things, and it takes just excessive effort,” one participant said. Another participant added: “I have to focus when I’m drinking water sometimes or else it goes down the wrong tube.”
Digestive symptoms may worsen swallowing challenges
The second theme was that digestive symptoms often affected swallowing, nutrition, and hydration. Participants commonly reported reflux, gastroparesis (a condition in which the stomach empties too slowly), dysmotility, nausea, bloating, vomiting, and constipation. Many said their swallowing issues worsened during flares of these symptoms.
“I would say that it (dysphagia) often flares with the [gastrointestinal] dysmotility and the autonomic dysfunction. So, I would say it’s a flaring pattern where if my issues as a whole are not controlled, the difficulty swallowing goes with that. But when things are doing well overall, I have less of an issue with difficulty swallowing,” one participant said.
The third theme focused on shortness of breath (dyspnea), which was common and could interfere with swallowing and nutrition. Some participants linked this breathing difficulty to dysautonomia.
“My biggest issue is the POTS. I have really bad tachycardia [rapid heart rate], shortness of breath on exertion,” one participant said. “I probably definitely can’t eat, and I don’t even have an appetite when I’m that short of breath.”
The final theme centered on participants feeling their symptoms were often dismissed as anxiety before underlying medical conditions were recognized.
“I think a lot of it comes down to, like, ‘okay, you’re a young woman. It’s anxiety’,” one participant said. “I think I experienced the medical gaslighting,” another added.
“hEDS is a fluctuating, multisystemic disorder that can impact any phase of swallowing, but predominantly esophageal/gastrointestinal phase,” the researchers wrote. They added that further studies are needed to better understand the mechanisms “of impairments associated with hEDS and dysautonomia across all phases of swallowing.”
