Staffan Berglund, MD, PhD, Associate Professor in Pediatrics at Umeå University Hospital, Umeå, Sweden and a member of the International Clinical Council on FOP. 

Nutrition refers to everything the body takes in to sustain health. Macronutrients (carbohydrates, proteins, fats) provide energy and building blocks while micronutrients (vitamins and minerals) support metabolism, immunity, and tissue maintenance. Good nutrition ensures the body has what it needs to grow, function, repair, and adapt—something especially important in a condition like FOP.

Individuals with FOP are at higher risk for nutritional deficiencies for several reasons. Chewing can become difficult when the jaw stiffens, and swallowing may be affected by neck or thoracic flare‑ups. Gastric emptying and intestinal mobility can be affected by spinal deformation and scoliosis. But even without mechanical challenges to eat, many patients with FOP experience gastrointestinal symptoms such as early fullness, constipation, reflux, or nausea, all together causing a poor appetite and reduced intake.

Different reasons for an overall low macronutrient intake (amount of food) will cause weight loss or impaired growth (in children) with secondary problems following such as fatigue, pressure ulcers, and muscle weakness. Regarding specific nutrients, a one-sided diet can cause deficiencies of iron, vitamin D, calcium or other specific micronutrients.

Because of these challenges, maintaining nutritional health in FOP requires early attention and thoughtful adaptation. Monitoring weight trends is essential, and levels of D-vitamin, calcium, and iron biomarkers should be measured regularly. Generally recommended food composition is, in most cases, also valid for FOP patients.

The number one option for all patients should be to provide a complete and accurate nutrition through regular foods. To enable its intake, practical strategies can make a meaningful difference:

Yet, even with efforts, an optimal intake can be challenging and particularly for those with significant jaw ankylosis or chronic swallowing difficulty, referral to a nutritionist is recommended to discuss how the foods can be improved. In some cases, dieticians can recommend nutritional drinks that guarantee a complete daily intake. In selected situations, a feeding tube or even gastrostomy may be needed to maintain safety and adequate intake. Such interventions require careful consideration and should be discussed with FOP medical expertise since the procedures include a risk of flare-ups. (Link FOP medical expertise to ifopa.org/emergency)

Supplements of specific micronutrients is sometimes but not always recommended. Most commonly, D-vitamin supplements can become necessary. If the calcium intake is kept low from diet, supplements can be discussed with the local dietician or doctor, but is not generally recommended.

With attentive planning and regular monitoring, nutrition becomes a powerful tool for supporting overall health, comfort, and resilience in FOP.

Marie H. Fahlberg, Mother of Hugo who is 27 and living with FOP in Sweden

For us, nutrition became an important part of living with FOP after Hugo experienced significant side effects from prednisone during his teenage years. That experience highlighted how strongly diet can influence the body’s ability to cope with treatment. Hugo and I talk about food as information for the body. Not as a strict diet, but as a conscious way of supporting the body in the best possible way. We try to create the best possible environment for balance and recovery. That means focusing on real food, good fats, protein, vegetables, berries, and a wide variety of nutrients.

Variety is actually one of our key principles. We try to include many different foods, colors, and nutrients in everyday meals. Smoothies and shakes are an easy way for us to include a broader range of phytonutrients, minerals, and healthy fats. At the same time, we keep things simple and sustainable so it works in daily life—and in emergency situations.

Another important part is that Hugo is actively involved. We talk about how food influences the body’s signals, energy, recovery, and overall wellbeing. It becomes a collaboration rather than something imposed.

Living with a rare condition like FOP means there are many things we cannot control. But nutrition, lifestyle, and mindset are areas where we can actively support the body. For us, that creates a sense of empowerment—and a way to actively participate in Hugo’s health and quality of life.

You can learn more about this important topic and other aspects of FOP management by reviewing the ICC's FOP Treatment Guidelines. Nutrition, Calcium & Vitamin D Guidelines is in Section 5: Special Medical Considerations in FOP (5-20). 

You can access information about nutrition and limited jaw mobility to share with your FOP patients and their families on the IFOPA website.