Dental care

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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 2800ppm 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.

Accessing dental care

For specialist FOP dental care, contact FOP Friends for the most up to date information.

Find an NHS dentist here: Find a Dentist

You can also request to see a special care dentist. Speak to your community dentist about a referral.

ICC Medical Guidelines

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 Clive Friedman (contact details below) for advice and guidance or to FOP Friends, who can connect them to another dentist with knowledge of FOP.

Contact details for FOP Dental Specialists

Dental and Maxillofacial Surgery Department General enquiries:

Dental & Maxillofacial Department
Great Ormond Street Hospital
London
WC1N 3JH

Service telephone number
020 7405 9200 ext 1099

dentalenquiries@gosh.nhs.uk

Dr. Clive Freidman

Specialist FOP dentist, paediatric specialist
Ontario, Canada
Tel: 001-519-679-9860 (office)
Tel: 001-519-657-6014 (mobile)

clive@dentistryforkids.ca

Dr. Corrie Crowe

FOP Specialist Dentist
New Jersey, USA
Tel: 001-856-258-4025

drcrowedentistry@gmail.com

Dr Robert Diecidue

Oral & Maxillofacial Surgery/Dentistry
Philadelphia, USA
Thomas Jefferson Hospital
Tel: 001-215-955-6215

robert.diecidue@jeffersonhospital.org

Professor Zvi Grunwald

FOP Anaesthetist Specialist
Philadelphia, USA
Thomas Jefferson University
001-215-206-7362 (cell)

zvi.grunwald@jefferson.edu

Professor. Richard Keen

FOP Specialist
Royal National Orthopaedic Hospital
Stanmore, London
Tel: 020 3947 0056

rno-tr.metabolicsecretary@nhs.net
PA: Janice.cohen@nhs.net

Professor Fred Kaplan M.D

FOP Specialist
Philadephia, USA
University of Philadelphia, Pennsylvania
Tel: 001-215-294-9145 (office)

frederick.kaplan@uphs.upenn.edu

The IFOPA has also produced some dental webinars 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.