FOP Oral Health Hub

Emergency Dentistry Contacts

US

Corrie J. Crowe, DDS
(856) 258-4025
[email protected]

Robert J. Diecidue, DMD, MD (Oral & Maxillofacial Surgery/Dentistry)
Thomas Jefferson Hospital
(215) 955-6215
[email protected]

Canada

Clive Friedman, DDS, FAAPD
Pediatric Oral Health & Dentistry
(519) 657-6014 (cell)
[email protected]

France

Dr Lisa Friedlander
Centre de compétence des " Maladies Rares Orales et Dentaires" O-Rares
[email protected]

India

Dr. Rajesh Bariker, BDS,MDS
Kids Dental Care Pvt Ltd
[email protected]

Netherlands

Dr. Elinor Bouvy-Berends
[email protected]

Sweden

Stina Ekström, DDS
Senior consultant paediatric dentistry
[email protected]
+46 8-20 78 04

Advocating With Your Local Healthcare Provider

When working with your local dentist and dental hygienist it is important to share resources to help them learn about FOP and how to best care for you.

You can find the guidelines for preventative oral healthcare, orthodontics & FOP, submandibular flare-ups and dental anesthesia on pages 80-87 of The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Considerations

In addition to offering to connect your local provider with one of the FOP dental experts listed above, we encourage families to print off these pages of the treatment guidelines and bring them to your provider before your next appointment so that they have time to learn about FOP before seeing you.

Finding a Routine with Carli Henrotay, who lives with FOP

Since my jaw locked at age 7, dental care has always been something really important to me. It took me until my late teens to become consistent and mindful with a routine. Lately, I’ve found a routine that works really well for me & my teeth are super happy! A good toothbrush is essential, and I love my Sonicare. Recently, I discovered Therabreath, which makes an oral rinse and toothpaste that has made a huge difference. My teeth and breathhttps://youtu.be/fcUw8XR55j8 feel cleaner and fresher. I’ve also started using a water flosser. It helps remove small particles and helps with fresh breath. I don’t feel good until my teeth feel good, so a good dental routine is key!

Early on, my parent’s took all the recommedations from the iFOPA. I’ve been going to the dentist 4x a year basically my whole life (which I actually don’t mind, I like the dentist)!

In the last couple of years is when I’ve become extremely passionate about all things related to self-care (body, skin, teeth). My parents tried to force it when I was younger, but I didn’t really understand. My advice to parents of kids with limited jaw mobility would be to keep the products accessible, let the kids know the importance of them, and find a routine that works for THEM.

Oral Health Treatment Guidelines

Introduction to FOP and Oral Health: Why Oral Health is Important

“Your mouth, body, and mind are all connected. Oral diseases can cause pain, discomfort, infections, and disrupt eating and sleeping patterns, all of which can negatively affect both physical and mental health. Taking care of your teeth and gums can significantly impact your overall well-being.”

Watch the video

Insights on the Importance of Oral Health

Oral Health and Cardiovascular: Watch the video

Oral Health and Communication: Watch the video

Oral Health and Breathing/Respiratory System: Watch the video

Oral Health and Gut, Brain and Immune System: Watch the Video

The Importance of Tools to Maintain Oral Healthcare
with Melissa Davis, OTR/L, IFOPA Family and Provider Support Coordinator

Adaptive tools can help you maintain good oral health and improve independence with oral care. It can be as simple as extending the handle on your toothbrush!

Check out our tools on the Ability Toolbox.