What you need to know about Ehlers-Danlos syndrome

Flexible? Double-jointed? Learn about the signs and symptoms of Ehlers-Danlos syndrome (EDS) and how early detection can lead to better management.

Being bendier than most can have its advantages, but it can also be a sign you have Ehlers-Danlos syndrome

As the Mayo Clinic explains, this group of inherited disorders affects your connective tissues — mostly your joints, skin and blood vessel walls — and people with the condition typically have very flexible joints and fragile, stretchy skin.

But what is Ehlers-Danlos syndrome (EDS) and what are the impacts?

Here’s what you need to know.

What is Ehlers-Danlos syndrome?

Ehlers-Danlos is a collection of genetic tissue disorders caused by problems with collagen in the body.

Women make up most EDS cases, and it takes an average of 14 years for the condition to be diagnosed, according to a Welsh study published in 2019.

Celebrities such as Jameela Jamil and Halsey have EDS but it remains relatively unknown and overlooked as a cause of chronic pain.

It has been reported to occur in one in 5000 people but some experts believe it’s much more common.

The Welsh study found the number was, instead, one in 500.

Symptoms of Ehlers-Danlos syndrome?

While there are varying types of EDS, according to Health Direct, they all involve extremely flexible joints and stretchy, fragile skin that is prone to bruising.

Chronic pain, bruising easily and slow-healing wounds are other symptoms.

“EDS can affect people of all races and genders,” Dr Amy Carmichael says.

“It is more common in women than men, with an estimated ratio of three to one.”

What causes it?

Dr Carmichael says the causes may vary and can begin in childhood or develop later in life.

“EDS is typically genetic and inherited, although some cases may result from spontaneous gene mutations,” she explains.

“Symptoms often appear in childhood but can manifest more prominently later in life.”

Dr Michela Sorensen says it is also associated with several other illnesses that can significantly impact a person’s lifestyle.

“People are more likely to suffer from a variety of other conditions, including migraine, bone and spine problems, digestive problems such as reflux and constipation, as well as a variety of heart and blood vessel conditions,” she says.

Signs you might have EDS

Asher Wolf was diagnosed with the hypermobile type of EDS at age 38 after experiencing many of these issues.

Several symptoms appeared in childhood that have since been explained by the diagnosis.

As a child, Asher was pigeon-toed and constantly tripping over or walking into door frames, and was so flexible they were nicknamed “Stretch” by the school sports teacher.

“I was a gymnast,” Asher says. “I (found) that really easy but I lacked core strength (and) I had joints that were slipping in and out of sockets.”

Asher’s shoulder developed a fracture due to repeated dislocation while hanging out washing.

Hospital visits became more common and chronic fatigue was considered as a possible explanation before an EDS diagnosis was reached.

How is Ehlers-Danlos syndrome diagnosed?

It can take many frustrating years of enduring a puzzling range of symptoms for the cause to be pinpointed.

Generally, diagnosis involves clinical assessment and examining the family history of the patient. For some forms, genetic testing can help.

The process can be challenging due to the variation of symptoms among the different subtypes of the illness and in individuals, along with other factors.

“Many people aren’t diagnosed until later in life as it can take time for the condition to declare itself, which is particularly the case for those with a milder form of the condition,” Dr Sorensen says.

Treatment for Ehlers-Danlos syndrome

Dr Sorensen says currently, there is no cure, and treatments are directed at managing symptoms.

“These include medication to manage pain and digestive issues, (and) physical therapy to improve joint stability.”

EDS is best managed by a team of medical professionals from fields including psychology, rheumatology, physiotherapy and diet.

“As it is a relatively uncommon condition and a lot of the symptoms are non-specific, it is not at the forefront of people’s minds,”Dr Sorensen notes.

“There is a lot of ongoing research into this condition, looking at both ways to better diagnose the condition and manage it.”

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Written by Rebecca Douglas.