Dyskeratosis Congenita is associated with increased risk of oral leukoplakia (which can lead to mouth or tongue cancer), periodontitis or tooth decay.
Your dentist should check for leukoplakia, as seen above, which should be treated to prevent progression to cancer.
Oral leukoplakia is a type of precancer of the inside of the mouth or tongue and shows up as white patches which cannot be scraped off. Leukoplakia is one of the hallmarks of dyskeratosis congenita. Dentists will look for leukoplakia during routine checkups and anyone with leukoplakia will be referred for biopsy and removal of the suspicious area, in order to prevent development of cancer.
Periodontitis is inflammation of the gums and is more common in people with dyskeratosis congenita. If untreated, periodontitis can lead to loss of teeth and increase the risk of heart disease, strokes, premature births and cancer. Periodontitis is prevented and treated by regular tooth brushing, regular flossing or interdental cleaning, and regular hygienist treatments. Deep cleansing and extended courses of low dose doxycycline antibiotics are used for treatment in difficult cases.
Tooth decay is more common in those with Dyskeratosis Congenita and is prevented by minimizing/avoiding sugary snacks and drinks, and by dental hygiene as above.
Mouth and tongue cancer is prevented by good dental hygiene, avoiding smoking, alcohol and restricting intake of very hot/spicy foods. Sharp teeth which cause irritation to gums or mouth should also be repaired.
You can find DC Action’s mouth and dental ‘Cheat Sheet’ here: Oral Oct 2023
You may find it useful to take this to your GP or dentist to help explain your symptoms.
Should you need to be referred to an oral medicine consultant, The British and Irish Society for Oral Medicine BISOM has a list of specialist clinics under the Clinical Care tab on its website https://bisom.org.uk/