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Vivienne Duval has always been flexible. She is capable of performing all the existing yoga postures, but it was not until the age of 58 that she realized that this flexibility was not necessarily a good thing.
Indeed, she discovered that it was the cause of all the strange health problems she had suffered for years: digestive problems, fatigue and pain.
At the beginning of the year, while watching a video on social media explaining the symptoms of hypermobility spectrum disorder (TSH), Vivienne had a real revelation.
“I recognized myself in everything that was described,” she confides. “So I did some research and consulted my doctor.”
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Vivienne's intuition was confirmed: she suffered from joint hyperlaxity. "I presented all these problems separately, but no one made the connection. Today it seems obvious."
This disorder could affect hundreds of thousands of people in the UK; However, many of them, like Vivienne, face considerable delays before obtaining a diagnosis.
Hypermobility spectrum disorders (HSD) affect connective tissue and result in joint hypermobility, meaning joints have a greater range of motion than normal.
Due to a lack of collagen in connective tissues, muscles must exert increased effort to stabilize joints; this causes fatigue, pain and a certain clumsiness.
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This condition can also cause gastrointestinal symptoms, as the connective tissue in the digestive system is more elastic.
Links have also been established between this disorder and neurodiversity, notably autism and ADHD.
Some people, like Vivienne, also have hypermobile Ehlers-Danlos syndrome (hEDS). This diagnosis is made when hypermobility and connective tissue abnormalities are observed throughout the body, accompanied by musculoskeletal problems such as dislocations.
Years of waiting for a diagnosis
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Hypermobility disorders could affect hundreds of thousands of people in the UK, although many go undiagnosed, according to a new study from the University of Edinburgh.
The study found that patients with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorders (TSH) in the UK waited, on average, between 19 and 21.7 years before getting a diagnosis.
The process of diagnosing TSH is made more complex by the fact that the *National Institute for Health and Care Excellence* (NICE) does not have specific and distinct clinical guidelines for making this diagnosis.
Dr Jessica Eccles, a researcher specializing in brain-body interactions and hypermobility, says that the diagnosis is sometimes a "lottery": the patient's luck then depends on their geographical location and the evaluation possibilities offered there.
She adds that TSH and hEDS seem to affect women more. “We know that women's health is not necessarily as well studied as issues that affect men.”
The study found that less than a third of those diagnosed reported that their GP initiated treatment for the disorder, and only 13% had access to a specialist.
"I don't know where to go"
This leaves some people feeling like they have nowhere to go, says consultant physician and rheumatologist Dr Stephanie Barrett.
She says she sees, “repeatedly” in her office, cases of people unable to work due to “severe mental fog” linked to hypermobility.
Vivienne is one of those people who feels helpless. “I need to be able to support myself, but I don’t know where to turn. I find out about this pathology via social networks.”
The mixture of frustration and relief that Vivienne feels about her diagnosis is a reaction that I completely understand.
I was diagnosed with Hypermobility Spectrum Disorder (HSD) earlier this year; I am aware of how lucky I was to discover this at the age of 24, and not years later, as was the case for many other people affected.
Vivienne and I suffer from joint pain, fatigue and digestive problems. As a child, I seemed to have a multitude of health problems, but I discovered this year that they were all linked to the flexibility of my joints.
After speaking with my specialist doctor, I learned that my clumsiness was linked to joint hypermobility syndrome, that it wasn't normal to wake up every morning already feeling tired, and that, unlike me, most people don't feel pain when standing in a queue or on the train.
Daily impact
Luke Grindlay, 23, was diagnosed with Ehlers-Danlos Syndrome (EDS) while he was at primary school, after his teachers noticed he was having difficulty using pens and cutlery.
He didn't seek treatment, which he likely attributes to "imposter syndrome," fueled by a lack of information about EDS.
"If you look for information about it on the Internet, you can't find anything... I'm suffering a lot, but since I can't find anything about it, I feel like I'm giving it too much importance."
The unpredictable nature of the syndrome's manifestations explains why it is recognized in the concept of imposter syndrome. Sometimes he can run long distances without much pain, while at other times a simple outing to run errands can completely exhaust him.
Luke works in the golf industry; his job often involves long periods of waiting in the field, which can be painful. However, he confides: “I have difficulty talking about it to others, because few people know about this pathology.”
Luke feels the repercussions intensify with age.
Vivienne, for her part, explains that her social and professional life have been affected. "I used to work as a masseuse, but I couldn't stand for very long and it exhausted me a lot."
She changed professions and now works as a masseuse for people with dementia, a less physically demanding activity.
According to Dr. Eccles, research suggests that HAT symptoms may worsen or manifest as a result of a stressor. This could be puberty or menopause; some studies also suggest a link with Covid.
This means that a person can live a large part of their life with flexible joints, before an "external environmental stressor" worsens the situation.
According to Dr. Eccles, there are ways to manage TEH, but no silver bullet. Physical therapy may be helpful, while other patients may benefit from gentle physical activity, such as swimming.
Dr. Barrett explains that physical therapy can help “tone and strengthen key muscles that hold the skeleton together.”
However, he believes that it is counterproductive to advise people suffering from these disorders to “simply do a little physiotherapy” and then resume their lives as if nothing had happened. In short, it highlights the need to pay greater attention to THB and hEDS.
“It is essential that stakeholders collaborate and share ideas, and that public authorities recognize this reality in order to tackle the problem.”
This article was originally written in English and we used an artificial intelligence tool to translate it. A BBC journalist proofread the text before publication. More information on how we use AI.
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