Getting diagnosed with hypermobility can help some people with Long COVID. Upcoming guidelines may make it easier.

In 2007, Rachel Graves was awake for a routine IUD insertion when her doctor tore through her uterus and said it had “the consistency of butter.” 

Graves, a former lawyer now receiving disability benefits, later experienced symptoms including chronic headaches, joint pain, menstrual problems, and a potential cerebrospinal fluid leak. In 2021, she was finally diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) — though not under the most recent criteria. 

Hypermobile EDS is a syndrome affecting connective tissues throughout the body. It can emerge after viral infections like SARS-CoV-2 and give people a higher risk of developing Long COVID, though researchers are still trying to determine the relationship between the illnesses. A prevailing theory is that viruses like SARS-CoV-2 can cause inflammatory responses in the body that injure connective tissues and make a person more hypermobile. 

Graves had organ, skin, and joint symptoms, along with spinal tissues so weak she required multiple neurosurgeries, but still did not qualify under the 2017 hEDS criteria. Her physician diagnosed her using an older set of criteria instead. Some people in the field believe the current criteria are overly restrictive, blocking patients from receiving a diagnosis. 

Kara Szczepanski, who has hEDS and other chronic conditions, similarly “jumped from person to person” while she was trying to get diagnosed. “I think I saw over 60 doctors in the past five years,” she said. Eventually, after seeing orthopedic surgery, rheumatology, and immunology specialists, she received a diagnosis from a geneticist. 

In 2026, the Ehlers-Danlos Society will release new diagnostic criteria for hEDS and hypermobility spectrum disorder (HSD) that could help more people — likely including many people with Long COVID — get an hEDS diagnosis and access care and support. While scientists have historically considered hEDS to be a serious genetic illness and HSD to be less severe, some now believe they are actually different severity levels of the same syndrome, which might be reflected in the new clinical guidelines. 

The term “hypermobile,” in both conditions, refers to a person’s joints moving beyond the normal range, like knees that can bend backward or shoulders that pop out of their sockets. Many individuals have hypermobile joints without any issue, but hEDS and HSD diagnoses are given to people who experience pain, skin problems, dislocations, and other symptoms due to abnormally loose connective tissue throughout their bodies. 

Under the 2017 criteria, patients must meet strict requirements to qualify for an hEDS diagnosis. According to the Ehlers-Danlos Society, doctors should give an hEDS diagnosis to people who have generalized joint hypermobility, symptoms in other organ systems, chronic pain or hypermobile relatives, and no other disease that would explain their symptoms. Those who show signs of hypermobility but don’t clear the hEDS benchmark instead receive an HSD label.

Under the current criteria, Graves said, doctors don’t take HSD as seriously as EDS. “It shouldn’t take needing to have your head reattached to your body for a doctor to realize you have EDS, nor should you have to see one of the top surgeons operating on EDS patients,” she said.

Although EDS isn’t curable, a patient can use their diagnosis to find specialist care, contextualize long-term symptoms, and seek treatment for comorbidities like mast cell activation syndrome (MCAS), dysautonomia, and neurosurgical conditions. Hypermobility can even affect considerations like surgical anesthesia, meaning that someone knowing they have it can be essential for self-advocacy.

It shouldn’t take needing to have your head reattached to your body for a doctor to realize you have EDS, nor should you have to see one of the top surgeons operating on EDS patients.

Rachel Graves, person with hEDS

What’s behind hEDS and HSD?

The origins of hEDS and HSD remain a matter of scientific debate. In the past, some researchers have argued that hEDS represents a genetic disease distinct from HSD and other forms of hypermobility. Studies have identified some genes that may drive hEDS, such as one preprint published last year by the Norris Lab at the Medical University of South Carolina. However, other experts argue that the distinction between hEDS and HSD is fuzzy, and environmental factors may have a greater impact than genetics on the development of hypermobility.

The Norris Lab paper focused on a genetic variant that occurs in about 1 in every 90 people, but to one expert who spoke to The Sick Times, attributing hEDS to that variant seems implausible, given the latest available research suggests far fewer than 1 in 90 people are diagnosed with hEDS. (This expert is a member of the Ehlers-Danlos Society’s committee for redesigning the hEDS criteria who asked to speak anonymously in order to voice controversial opinions.) That means the gene identified is unlikely to be a major factor in the disease. 

This expert also drew parallels between the hypermobility spectrum and the varying presentations of vascular EDS, a serious disorder in which arteries and organs are at risk of rupture. In vascular EDS, researchers have found thousands of significant genetic mutations, leading to diverse symptoms and severities among patients. 

“We recognize that there’s a huge spectrum that you see in the people with vascular EDS,” said the scientist, “and it wasn’t clear why [guidelines] didn’t want to include the same notion for people who had what would be called hypermobile EDS, and instead separated it into hypermobility syndromes.” 

Other researchers have found multiple examples of changes common to the blood of people with hEDS and HSD. Additionally, one study noted wide variability in how doctors performed hypermobility testing, meaning that whether a patient is diagnosed with hEDS or HSD could depend on the provider they visit. Finally, some experts on EDS’s common comorbidities, such as MCAS and dysautonomia, have hypothesized that both autonomic dysfunction and inflammatory chemicals released by mast cells may be associated with worsening hypermobility, or may even cause it. 

Hypermobility may develop as the body fights external threats with mast cells and other powerful elements that can degrade connective tissues, said Anne Maitland, the medical director at the Ehlers-Danlos Syndrome Institute at the Medical University of South Carolina. 

Maitland pointed to a Russian paper that found increased levels of chymase, a mast cell enzyme that can increase leakiness in the tissues that line body surfaces, in patients with connective tissue disorders. Chymase helps the body respond to parasites; Maitland singled out viral infections and toxins as two other events that can result in the body “raising the alarm” to fight a threat, but damaging connective tissue in the process. 

Maitland compared connective tissues to border checkpoints: “The mast cells and the nerves will modify their activity based on what the connective tissue borders are encountering.” She said hypermobile individuals may have an oversensitive alarm at their “checkpoint” that calls in inflammatory substances like cytokines. Once the episode passes, hypermobile individuals have impaired abilities to repair connective tissue. 

“I would argue that EDS, the hypermobile form, may not necessarily be an inherited collagen issue,” said Maitland. “I’ve seen patients be [diagnosed with] HSD, and then they get a hit and now they fall readily into hEDS.” In other words, patients may have hypermobility or a predisposition to it without serious problems, but after an immune event like a SARS-CoV-2 infection, become symptomatic with hEDS. 

The expert from the Ehlers-Danlos Society’s committee echoed Maitland’s comments and cited Long COVID as a common manifestation of acquired hypermobility. 

“Many people had been very active as kids, active in sports, may have been injured a bit more easily, but then something happened. And that something was viral infections, occasionally trauma like automobile accidents, sometimes pregnancy,” they said. COVID-19 “put into perspective” for some researchers that “post-viral things can give rise to all this other stuff. And that it could happen to anybody.”

COVID-19 “put into perspective” for some researchers that “post-viral things can give rise to all this other stuff. And that it could happen to anybody.”

Expert from Ehlers-Danlos Society’s committee

Obtaining accommodations and disability as a hypermobile patient

By the time patients are symptomatic enough with hypermobility and its comorbidities to start seeing specialists, they may be struggling to keep up at work, school, or home. Being diagnosed with an illness like hEDS opens up avenues for them to receive accommodations or disability support. 

Andrew Kantor, a California lawyer who specializes in disability cases for people with myalgic encephalomyelitis (ME), frequently sees people who have hEDS along with ME. 

For a hypermobile patient looking to get social security or private disability benefits, Kantor said a diagnosis is necessary but not sufficient to win a case. An hEDS diagnosis could support a claim — but, Kantor cautioned, they would still need to show how their hypermobility disables them. 

Szczepanski said her SSDI case was initially denied three times despite over 1,000 pages of supporting documents, before finally receiving approval in February 2025. 

“We went for the multi-system approach,” showcasing how hEDS interacts with other illnesses to create disability, Szczepanski said. “The most important thing your doctor can include in your notes is what your symptoms of EDS are and how they are actually limiting you,” she said. For example, a primary care provider summarized how recurrent knee dislocations prevented her from doing certain activities. 

The most important thing your doctor can include in your notes is what your symptoms of EDS are and how they are actually limiting you.

Kara Szczepanski, person with hEDS and other chronic conditions

Hypermobile people who are able to work have a different legal framework to contend with, called “reasonable accommodations.” Per Kantor, employers have discretion when it comes to determining whether a proposed accommodation is “reasonable.” 

Under the Americans with Disabilities Act, an employee does not need a diagnosis to receive accommodations — they just have to be impacted in “one or more major life activities” — but employers are allowed to ask for a doctor’s note. Finding medical professionals who understand hypermobility and are willing to document it is an essential step for people seeking accommodations.

Kantor noted employers have seemed more willing to accommodate disabled employees since 2020.

What’s on the horizon for people with hypermobility?

Plenty of questions remain as the Ehlers-Danlos Society’s committee continues to develop the 2026 hEDS guidelines. According to the society’s website, the Road to 2026 committee met in January to discuss the results of a research study on hEDS, HSD, and their comorbidities. Next steps include planning a scientific conference on hypermobility, incorporating feedback from a patient survey, and continuing committee meetings.

The scientist from the Road to 2026 committee suggested a few ways that the criteria might be changed. First, the committee could add a genetic marker, such as the variants identified by the Norris Lab. They could also make changes to the Beighton scale — the test for hypermobile joints — to add other common problem areas such as shoulders and hips. Finally, comorbidities such as dysautonomia and MCAS could be incorporated into the diagnostic criteria. 

In the meantime, patients seeking evaluation for hEDS should seek out compassionate providers who understand the diverse symptoms hypermobility can produce throughout the body. Both the Ehlers-Danlos Society and Dysautonomia International host directories of qualified professionals, but Szczepanski said she’s had the most luck finding doctors through local support groups, recommending Jon Rodis’s New England connective tissue disorder support group in particular. 

“Getting diagnosed with EDS made a huge difference in my life,” Graves said. 

“Even though EDS is not very treatable, the diagnosis explained my problems with many things, including physical therapy and recovering from surgery. I’ve sought out therapists and surgeons who know more about EDS and my comorbidities, and I’ve been able to get help with hip pain that’s haunted me since 2010.”

---

Margot Armbruster is a writer and editor with cancer and Long COVID–induced hEDS, ME/CFS, and other illnesses. Margot lives in the Midwestern U.S. and online at margot-armbruster.com. 

All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.