If you can’t connect the issues … think connective tissues

Understanding Ehlers-Danlos Syndrome can make a difference to patients’ lives – and that of the dental team

11 October, 2023 / indepth
 Will Peakin  

Dr Audrey Kershaw is an Oral Surgeon who qualified in 1987. She worked as an Associate Specialist in Dundee Dental Hospital and School between 1998 and 2017, where she lectured on medicine and surgery in dentistry and trained more than 1,000 dentists.

A transition to private practice in recent years led to the foundation of Oral Surgery Scotland, Dr Kershaw’s own peripatetic service. Through this, she takes her own brand of thorough and efficient patient care to practices across the length and breadth of Scotland.

Alongside, she has been working with the charity Ehlers-Danlos Support UK and the Scottish Government Focus Group for Rare Diseases, lecturing several times a year. Her recent work with Ehlers-Danlos Syndrome (EDS) patients has enabled her to highlight the relevance of connective tissue issues to her dental colleagues.

As dentists we are in a perfect environment to identify these patients

“If you can’t connect the issues, think connective tissues,” is a common phrase amongst those in the EDS community.

Since 2017, Dr Kershaw has taken an interest in connective tissue disorders and feels this is an area where we can make a real difference to patients’ lives. She also stresses that understanding EDS can make the dental team’s life much easier too.

Why did you get involved with EDS patients?

Five years ago, I started seeing a pattern emerge with some of my oral surgery patients. I would often be asked to help with patients reporting a history of local anaesthesia issues, complex multi-system medical issues, or of being of a certain anxious character type; all features that I would eventually discover can point towards connective tissue disorders.

I read widely into these areas and went on to complete the 10-week ECHO course with the charity Ehlers-Danlos Support UK.

This has allowed me to identify these patients and understand their issues, so I can better help them through their treatment. I pick up at least a handful of these cases organically each month and am often referred several more where these issues are suspected or diagnosed.

As dentists we are in a perfect environment to identify these patients, and my hope is to share my knowledge with colleagues so we can better help as many of them as possible.

What is EDS?

Ehlers-Danlos Syndrome (EDS) is a collective name for 14 different collagen defects of genetic origin, which affect various connective tissues in the body such as skin, joints and internal organs.

The most common type is hypermobile Ehlers-Danlos Syndrome (hEDS), with a growing body of evidence suggesting a much higher prevalence than previously thought. Owing to its multi-system nature, there are close links between EDS and:

  • Postural Tachycardia Syndrome (PoTS)
  • Mast Cell Activation Syndrome (MCAS)
  • Irritable bowel syndrome (IBS)
  • Chronic fatigue syndrome/Myalgic encephalomyelitis (CFS/ME)
  • Gastro-oesophageal reflux disease (GORD)
  • Mood disorders such as anxiety and depression

This interrelation between several concurrent issues is what gives rise to the phrase ‘if you can’t connect the issues, think connective tissues’, and can lead to many patients experiencing a frustrating journey through medical specialties without a single cause ever being identified: it takes the average Ehlers-Danlos Syndrome patient 10 years to obtain a diagnosis.

Connective tissue disorders are a complex topic to navigate and there is significant overlap between EDS and the nearly 200 or so other collagen disorders.

What I stress both to patients and colleagues, is that it often matters less what the exact diagnosis is – this can be left to medical professionals and genetic testing where it is available – and more that, through a general understanding of common features, we can offer an improved dental experience and signpost towards lifestyle and medical interventions that improve quality of life.

Over the past few years, I have been delivering CPD sessions to dentists and other healthcare professionals with the aim of helping them better understand connective tissue disorders and
how they have a huge role to play in identifying possible cases.

What should dentists be looking out for?

If there was one thing that I would ask the dental team to keep in mind in flagging Ehlers-Danlos Syndrome, it would be persistent failure of local anaesthesia (LA); a widely-reported phenomenon in EDS.

This is what I see most often, and sadly all too many patients report hearing the words “you must be numb” before tolerating a procedure in unnecessary pain. To this effect, a simple enquiry about LA history should take its place as a routine part of a new patient examination.

Others may present with TMJ issues (particularly myofascial pain, headaches and subluxation), or erosive wear as a result of gastro-oesophageal reflux disease (GORD).

There are also emerging links to enamel hypoplasia, aggressive periodontal disease and unusually fast and painful orthodontic treatment. Any one of these, in the context of a medical history which alludes to some of the conditions listed previously, could be suggestive of an overarching connective tissue issue.

Interestingly, there is also a possible link between EDS and congenitally missing lingual and labial frenula, and I find noting this incidentally in an intra-oral exam can be a useful early indicator to screen more closely for the dental issues listed above.

Why is detection important?

We must stress that, as dental professionals, we are unable to diagnose connective tissue disorders.

However, to a receptive patient a suggestion of the link between their dental issues and general health issues under the umbrella of a connective tissue disorder can give useful encouragement for them to explore the topic further and seek advice from their GP.

I have been fortunate to be able to help many patients tie together lifelong debilitating symptoms and find support to make sustained improvements to their quality of life. There is an EDS GP toolkit – EDS Toolkit – which may be useful.

Ehlers-Danlos Support UK is also available for patient support. Similarly, patients with undiagnosed connective tissue disorders can present unexpected management issues, especially in primary care. Awareness gives us better scope to offer care that meets these patient’s needs.

Moreover, with the ability to suggest that features of a patient’s presentation fit with a possible connective tissue issue, we give ourselves greater confidence to make higher-quality referrals to secondary care where necessary.

Get in touch

“My hope is to raise more awareness amongst my dental colleagues,” said Dr Kershaw. “Dental professionals have a great role to play in identifying some of the signs and symptoms relating to patients who live with connective tissue disorders.

“If you would like to learn more, I run free CPD talks for dentists and dental professionals. To enquire about the next available talk or invite me to offer a free CPD talk at your practice, please contact hello@oralsurgery.scot.”

The zebra is the symbol of Ehlers-Danlos Support UK because, it says, those with EDS are the unexpected and, as the saying goes: “Sometimes when you hear hoofbeats, it really is a zebra.”

Tags: Clinical / Diagnosis / EDS

Categories: Feature / Magazine

Comments are closed here.

Scottish Dental magazine