Oral and Dental Care

Like the rest of the body, the oral, pharyngeal and esophageal linings are intensively compromised by scarring and tissue shrinkage, especially in RDEB and JEB. Individuals with RDEB typically have extreme fragility of the skin inside their mouths, and ulcerations can affect all areas of this, including the tongue. The lesions on this surface also heal with scarring. The continuous process of blister formation and healing with scarring results in marked changes in the oral structure.
The tongue loses the small, nipple like structures on its surface that give it its characteristic rough texture, and becomes bound down to the floor of the mouth, which is a condition known as tongue tie (ankyloglossia). This causes restriction in the tongues range of motion and movement. With tongue tie, a usually thick or tight band of tissue ties the bottom of the tongues tip to the floor of the mouth. A child with RDEB or JEB therefore may have difficulty in sticking their tongue out, which in turn can affect the way they eat, speak and swallow. This, in addition to scarring induced from blistering can make it very difficult to fully open the mouth, thus making brushing teeth and dental treatment challenging.

Oral Hygiene

Oral hygiene is the practice of keeping one’s mouth clean and free of disease and other problems by regular brushing of the teeth and cleaning between them. It is important that oral hygiene be carried out on a regular basis to enable prevention of dental disease and bad breath. As EB sufferers usually have restricted and smaller mouth openings, it is essential to continue with oral care as best as you can to minimize tooth decay and the loss of teeth.

Below are the tips to improve oral & dental hygiene in EB:

  • Brush teeth twice a day with a soft bristled toothbrush using a fluoride toothpaste for at least two minutes and rinse with clear water.
  • Limit sugar intake to prevent dental caries, and aim to brush teeth or use water to rinse the mouth after eating sugar laden snacks or sweets.
  • Use warm salt water for gargles regularly as it can have a soothing and disinfecting effect on inflammation and sore mouths.
  • Incorporate the use of a mouthwash, preferably antibacterial, that both cleans and strengthens teeth and gums.

Dental Care

As the mouth and oral cavity are extremely fragile, if any dental problems present, please only allow a dentist with experience and knowledge in EB patients, and who is familiar with the disease to treat you. 

Never allow any dental work to be performed by an inexperienced dentist as this may lead to devastating injury and loss of teeth.