Ehlers Danlos: Top 10 Dental Concerns

Those with Ehlers Danlos Syndrome (EDS) know they’re literally one in a million. Only 5,000 worldwide are diagnosed, which is like picking out one person out of the entire population of Philadelphia. It takes 12 years on average to accurately diagnose someone with EDS since it is often confused with other nerve pains like fibromyalgia. In the process of trying to be heard, these patients often feel frustrated from being mistreated or misunderstood.

Discussed are top 10 dental challenges to better inform patients and dental providers how to manage and move forward.

EDS is a hyperelastic, connective tissue disorder affecting not only the entire body but also the oral health. General chronic fatigue is a serious issue. There is no cure so the challenge is to cope with the new normal. There are multiple variations of EDS and not all EDS will have the same complications but these are the most common dental challenges for Ehlers Danlos patients: 

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Difficulty Numbing

Most EDS patients have difficulty getting or staying numb. This is probably the #1 concern most EDS patients have is that the provider believes the patient to be numb when that may not the case.

Solution: dentists can double the anesthetic or wait twice as long after numbing to do treatment. 

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Anxiety

Dental anxiety is prominent among most EDS patients due to difficulty numbing, providers not believing when these patients are in pain, jaw issues, delayed healing, etc. Depression and anxiety are common.

Solution: do less treatment at a time and have shorter appointments. Either sedation like nitrous oxide or the halcion pill can substantially help.

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Bleeding

Bleeding can lead to delayed healing or hemorrhaging. 

Solution: notify your dentist if you are a heavy bleeder and depending on the treatment received all can plan accordingly.

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Wound Healing

Especially after difficult dental treatment like crowns or extractions, bruising and slow healing, lingering pain are common.

Solution: Vitamin C helps with healing and should be taken regularly. After extractions, strictly follow standard protocol until fully healed: do not lift heavy objects, no negative pressure like sucking through straws, put constant pressure over the site immediately after treatment, etc.

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Orthodontic Complications

With gums being fragile, braces can cause ulcers rubbing against the gums. Teeth move quicker than regular patients. This can lead to bone eroding and not repairing itself and patients have a higher potential of teeth reverting back to their position prior to braces.

Solution: if braces interfere with the gums, promptly reach out to your orthodontist. Use wax on brackets when irritated. Wear your ortho retainers religiously after braces are removed.

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Cysts

Those with vascular EDS are more prone to getting cysts called odontogenic keratocyst. This commonly forms in the development stages and is usually positioned on the lower jaw below the molars. This cyst forms from malformed or unerupted teeth, both are common conditions with EDS.

Solution: take yearly x-rays and assure that the bone is visible in those films below the lower back molars.

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Jaw Challenges

EDS are often on the spectrum of jaw pains ranging from mild chronic discomfort to a more serious temporomandibular joint disorder (TMD). Symptoms include substantial jaw soreness, headaches or migraines, or jaw dislocation.

Solution: refrain from chewing gum or frequently opening wide. Eat softer foods at meals. A professional night guard is highly encouraged. Emphasize to your dental providers to offer shorter dental appointments whether it’s a cleaning or doing less treatment at a time. If jaw treatment is needed consider physical therapy along with a night guard.

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Halitosis (Bad Breath)

Delayed healing, friable gums, and a greater propensity of having gum disease creates areas of plaque and tartar to collect much easier. This leads to lingering bad breath that is more pronounced compared to the general population.

Solution: Mouthrinses are bandaids for a bigger issue. We do recommend Therabreath, Hello Activated Charcoal, or CariFree mouthrinses. To control bad breath though we stress the importance of being meticulous in how you care for your teeth and being consistent on dental cleanings less than every 6 months ideally.

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Gum Disease

EDS mouth gingiva (gums) and soft tissue are more friable and thus can be weaker. This leads to easy tearing, damage easier, more recession and a greater potential for bone loss and periodontal disease. Due to this discomfort, EDS patients typically brush less effectively from the bleeding or discomfort and thus accumulate more plaque and tartar. 

Solution: More frequent cleanings every four months instead of twice a year. For toothbrushing, use either a super soft brush like a Nimbus or gently use an electric toothbrush: Sonicare or OralB are just as effective.

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Teeth Abnormalities

Several dental characteristics can create challenges for teeth. Deep grooves in back teeth and underdeveloped enamel create a greater susceptibility for cavities and more attrition that wears teeth down. Pulp stones in the nerve chamber also make root canals more challenging too. 

Solution: Be meticulous in caring for your teeth at home! You must brush twice a day, floss, waterpik, and get fluoride varnish treatments during every dental cleaning. Here are other tips that prevent cavities outside of brushing and flossing.