Excellent dental care and hygiene is important for everyone, but it is even more so for people living with FOP.
The invasive nature of dental procedures such as filling a cavity has the potential to cause many problems. Good preventative dental care at home can lessen the need for dental intervention.
FOP can cause additional challenges for someone with the condition if it causes the opening of the jaw to be restricted or even fixed. This can make it even more difficult to effectively clean all the teeth.
Good oral health is necessary to ensure teeth and gums stay health. Poor dental hygiene can lead to unhealthy gums, tooth decay (a need for fillings), pain, bad breath. If a tooth is very badly decayed it may need to be removed.
Top Tips for Terrific Teeth
Visit your dentist regularly, at least twice a year. You can also request to see a special care dentist.
Clean teeth twice a day. Children under 7 should be supervised when brushing to ensure the brushing is effective. Ensure all surfaces of the teeth are cleaned. Children over 7 can also used a mild fluoride mouthwash, once a day, at a different time to brushing.
If you have restricted jaw opening, use a toothbrush with a smaller head, or purchase a specialist toothbrush.
Use a high fluoride toothpaste with at least 1400ppm fluoride (often sold as 6+ toothpaste for children). It is possible to get 2000ppm toothpaste from your dentist.
Ask your dentist about having fluoride paste applied to the back teeth to strengthen them and help to prevent decay.
Stop bottle feeding by 18 months. Only ever put water or milk in the bottle.
Avoid sugary foods, fizzy drinks, and snacks. Eating and drinking a lot of sugar significantly increases the likelihood of cavities, which will then need treatment. Dilute fruit juices which contain a lot of natural sugars.
Choose tooth-friendly snacks such as vegetables, rice cakes, milk, cheese and nuts.
If you are concerned about any aspect of your dental health, contact your dentist immediately.
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Visit the Oral Health Foundation’s website for more information about dental care for people with medical needs.
Before consenting to any dental treatments, please ensure your dental surgeon, anaesthetist, and medical care team have familiarised themselves with the ICC’s Medical Guidelines for FOP Patients.
The special care dental team should also contact Dr Gehan Abou-Ameira for advice and guidance.
Contact details for FOP Dental Specialists
Great Ormond Street Hospital
Tel: 001-519-679-9860 (office)
Tel: 001-519-657-6014 (mobile)
New Jersey, USA
Thomas Jefferson Hospital
Thomas Jefferson University
Royal National Orthopaedic Hospital
Tel: 020 3947 0056
University of Philadelphia, Pennsylvania
Tel: 001-215-294-9145 (office)
The IFOPA has also produced some dental resources for people living with FOP.
FOP dental expert Dr. Clive Friedman and Family Services Coordinator Karen Kirchhoff discuss about the importance of oral health and it’s impact on the overall well-being of the individual.
Dr Friedman and Karen also answered questions from the community, and suggest dental health products for people with specific dental requirements.
For more suggestions for tools to help with dental care needs, click here to visit the IFOPA’s Ability Toolbox website: https://guidebook.ifopa.org/