Dental anxiety in disability: Ehlers-Danlos syndrome

Ehlers-Danlos syndromeAbi Chapman talks to us about her experiences receiving dental care whilst living with Ehlers-Danlos syndrome.

It is common knowledge amongst dentists, and carers of people with disability, that going to a dentist is a complex task. This is often due to that person’s fear and anxiety.

However, that common knowledge is usually amongst persons with learning disabilities. So, what about disabilities outside of that box?

Ehlers-Danlos syndrome is a group of complex genetic conditions. It causes a fault in the connective tissue, resulting in issues with a person’s skin, bones, blood vessels, organs, and tissues.

The symptoms of this condition sit on a spectrum, from a person affected mildly, with loose joints, to a person’s condition being life-threatening or life-limiting.

For myself, Ehlers Danlos syndrome limits my life. Despite that, I’ve fought through it. I’ve attained my masters and set up a social enterprise that explores how we can improve accessibility for people with disability in our society. One aspect of that is our teeth.

Ehlers-Danlos syndrome

Ehlers-Danlos Syndrome can cause our teeth to be weaker and to break down. It causes fillings to have a shorter life span. And root canals to fail, or to still cause pain after treatment.

It also causes a resistance to anaesthetic. For some, anaesthetic doesn’t work at all, for others, it wears off much quicker than it should. This causes a huge problem for the patient, and the dentist.

Treatment often becomes problematic because dentists have no education on Ehlers-Danlos syndrome. Patients with the condition usually don’t get a diagnosis until their 20s. And by this time, dental anxiety has already manifested.

I want to share with you an example of how dental treatment can go incredibly wrong. And how dental treatment can go incredibly right. I want to share my own personal experience.

How my dental anxiety began

Dental anxiety began for me at eight years old. By this age I was already having multiple fillings, and decay was predominant in a lot of my teeth. I also had overcrowding, common in young children.

I was referred to a dental hospital to have teeth extractions. As any child would be, I was nervous and didn’t fully comprehend what was happening.

I was taken down to theatre, and the nurses were lovely, everything was going to plan. Until I woke up on the operating table.

By the time everything was complete and I was back with my parents, I was screaming how I had been tortured, how painful the experience had been. I was quickly discharged despite serious bleeding.

The journey home felt like forever. My Mum held me in her arms in the back seat of the car, using tampons to try and stop the bleeding in my mouth. I vowed never to see a dentist again.

Retrospectively, I understand that I didn’t have a diagnosis with my condition. And that not all dentists worked the way they did, at the age of eight I couldn’t comprehend.

I refused to have anything to do with dental care, even brushing my teeth was a screaming match. As I got older however, my parents lost the authority to take me to the dentist or to get me to brush my teeth. I simply refused.

‘It felt like torture’

By late teens, my teeth were a mess. They had decayed quicker due to my condition alongside poor oral healthcare.

It got to a point where I was living off cloves, different numbing agents you could buy from the chemist, and bags of frozen peas to numb the pain!

On the rare occasion I gave in and went to the dentist, my fear was so uncontrolled that I would pass out before I had even got to the dental chair. The smell of a dentist was enough to cause me to just fall to the floor.

When dentists did manage to get any treatment, it felt like torture. Anaesthetic would wear off and I’d feel everything.

But my dentists were never aware of the complexities Ehlers-Danlos caused with dental treatment. So I was never believed.

Holistic view towards dental care

In 2019 I was admitted to hospital. Not for a dental issue, but for my condition.

On the day I was due to be discharged I woke up with a large abscess on my gum. As I had been in due to an infection that had destroyed my immune system, doctors were adamant that I saw the hospital dentist.

I did everything to persuade them not to, but they wouldn’t back down. And so the dentist came to see me.

I could have passed out when I met her, not for fear, but for shock. Shock of the compassion she showed, and the full understanding she had of my condition. So I agreed to go to the clinic.

The clinic was not your standard dental practice, it was special care dentistry. Special care dentistry focuses on the oral health of individuals with accessibility impairments that causes your standard dentist not be adequate to oversee a person’s dental care.

It isn’t just about oral health; it’s about taking a holistic view towards the improvement of that person’s care.

We decided that a lot of my teeth needed removing. Through surgery I had 14 teeth removed and others repaired.

I would then need to go to the clinic to have further repairs under inhalation sedation.

Removing the fear

Fast forward to 2022, I am still under special care dentistry, and the dentists looking after my care have been some of the best medical practitioners I have ever had the pleasure to meet.

I am not afraid to go to clinic, nor am I afraid to have treatment.

The removal of fear came from the understanding of my condition. Every single person who works in the clinic appreciates the fact that I have a better understanding of my body than they do. The team listens to me.

Clinicians undertake treatment following a conversation. They adapt the sedation and amount of anaesthetic to combat the complexities of my condition.

I am aware at some point the rest of my teeth will need removing. Not due to poor oral healthcare, but due to my condition causing a weakening in my teeth and a rejection of treatment. And I am OK with that.

I am also OK with the fact I must see my dentist more than I must see any other specialist.

The impact of disabilities in healthcare

So why is my experience important? It’s important because my story is many people’s story.

Ehlers-Danlos syndrome is rare, but it is more common than we think. We need to get to a stage where, you are the dentist, you have the medical training. But we need to understand and accept that the patient has more knowledge than we ever will, when it comes to living with the condition.

They know how they react to treatment. They know what works and what doesn’t, and we need to trust the patient when they communicate their needs to us.

I hope and work towards a day where all medical practitioners learn about disability in medical school. When they have lectures from disabled individuals on life and medical experience from their perspective. That’s the aim for the future.

For now, if you’re not a special care dentist, if you haven’t read up or trained on the impact of disability, I ask you to take a minute and read up on it. The information is all there at your fingertips.

It’s also OK to ask your patient. Some of the best conversations I’ve ever had have been with my dentist. Some of the most important conversations I’ve ever had have been with my dentist.

We are always happy to help you help others. So just ask!


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