Ehlers-Danlos syndrome and its dental implications

May is Ehlers-Danlos Syndrome (EDS) Awareness Month, and Matt Everatt explains what this unfamiliar and misunderstood condition is and why dental professionals should be aware of it .

My wife was recently diagnosed with Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder.

EDS is characterized by joint hypermobility, skin hyperextension, and varying degrees of tissue fragility, as well as a variety of multisystem disorders. The current 2017 Villiefranche EDS classification distinguishes 13 different types with different clinical manifestations.

Sadly, until a few months ago, the vast array of symptoms my wife had experienced over the years had been misunderstood and, dare I say, misdiagnosed. This seems obvious to us now. Others have described similar misdiagnoses as “eureka moments.”

My wife was diagnosed with hypermobility syndrome as a teenager and was labeled a “flexible person.” Sadly, EDS has hit her hard over the past few months and as we discovered, the syndrome continues to flare up!

Since it's EDS Awareness Month, I wanted to share some information about the dental impact. This is because some of you may have EDS, or they may have undiagnosed EDS symptoms.

The Ehlers-Danlos Society website states that the average time to diagnosis of EDS is 10-12 years, and it is often misdiagnosed as fibromyalgia, myalgic encephalomyelitis (ME), or atypical facial pain. This delay can cause a lot of physical and psychological harm.

Dental and Oral Impact

Because EDS is a connective tissue disease, soft tissue, bones, and teeth can all be affected. Bone loss and periodontal disease may be more prevalent, and soft tissue is susceptible to damage from collagen deficiencies.

Temporomandibular joint problems and headaches

The temporomandibular joint (TMJ) and ligaments are often affected. Dislocations, unlocks, and atresias are relatively common, as are cervicogenic headaches, migraines, and muscle aches.

Patients with EDS may have craniocervical instability (CCI). It is easy to label these patients as “TMD patients,” which is problematic in itself because it is not a diagnosis—it is just another symptom of a complex syndrome.

Complications of local anesthesia

As many as 88% of EDS patients report either complete, partial, or rapid loss of anesthesia resistance. This has been reported to be true for all available anesthetics, with 4% of articaine providing only marginal benefit.

Many medical and dental professionals remain unaware of this connection, and many patients are manipulated by their healthcare providers.

Dentists can identify EDS

I spoke with GDC specialist oral surgeon Dr Audrey Kershaw about EDS and how she helps this common but poorly managed patient group.

“If you can't connect the dots, think about connective tissue,” Audrey says.

This is a commonly used phrase in the EDS community. Since 2017, she has been interested in hypermobility disorders and believes this is an area where we can make a real difference to patients' lives. She also emphasized that understanding EDS can also make the dental team's job easier.

Audrey also said, “Four years ago, I started seeing a pattern emerging in oral surgery patients who had local anesthesia issues, some medical issues, and had a certain personality type. I read extensively in these areas. , and completed the 10-week ECHO course at the Ehlers-Danlos Society.

“This allows me to identify these patients and problems so that I can help these patients complete their treatment. I see at least one or two cases like this every week. I hope to share this knowledge with colleagues and peers so that together we can help as many patients as possible.

“As dentists, we are in the perfect environment to identify patients with EDS. Once we understand something about the condition, we can begin to recognize the dental relevance of hypermobility syndrome.

“Over the past few years I have been delivering CPD courses to dentists and other healthcare professionals with the aim of helping them understand more about EDS and how they can play a huge role in identifying possible cases and managing them accordingly .

“Some typical problems faced by patients with EDS include local anesthesia failure, molar incisor hypomineralization (MIH), orthodontic speed and pain, temporomandibular joint problems, anxiety, and many multisystem disorders.”

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Education Career

It is important to conduct awareness campaigns such as EDS Awareness Month and conduct CPD courses for dentists. We hope that dentists will recognize the multisystem signs and symptoms of patients with hypermobility disorders and demonstrate increased understanding and the ability to modify treatment to meet the needs of this population.

Most importantly, we must know when and where to refer these cases so they can get help for their medical problems.

Click here to visit the EDS Association support page, where you can find more information about dental impacts. I hope it helps.

We hope to continue to raise awareness and plan to hold learning sessions for dental and other healthcare professionals in the near future.If you are interested in learning more, please send an email [email protected] Or visit

Ehlers-Danlos UK support:

For reference please contact [email protected]

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