Nutrition

A balanced diet is important for everyone, but that may not be easy if you are living with FOP and face challenges with eating, swallowing or feeding independently.

If you are at all concerned about your diet or about maintaining a healthy weight, it is strongly recommended that you seek advice from a nutritionist or dietician, who will be able to assess your calorific needs.  This needs to be personalised to you, based on your specific needs and any limitations or challenges you make face.  If you are having difficulties with swallowing, you should get a referral to a speech and language therapist.

Here are some general guidelines to ensure a healthy, balanced diet:

Focus on nutrient-dense foods: Choose foods that are rich in essential nutrients to support overall health. Include a variety of fruits, vegetables, whole grains, lean proteins, and healthy fats in your diet. These foods can provide important vitamins, minerals, and antioxidants.

Adapt your food texture and consistency: Depending on your specific challenges, you may find it easier to puree or blend some of your foods, chop them into smaller and more manageable pieces.  A speech therapist or swallowing specialist may provide guidance on suitable food textures.

Meal substitute drinks: Some people with FOP take enriched meal-replacement drinks such as Ensure.  Speak with a nutritionist or health care professional if you think this may be a solution for you.

Adequate protein intake: Protein is important for tissue repair and maintenance. Include protein sources such as lean meats, poultry, fish, dairy products, legumes, and plant-based protein alternatives. If swallowing is difficult, options like smoothies, protein shakes, or pureed protein sources may be considered.

Include calcium and vitamin D: FOP can affect bone health, so it’s important to consume adequate calcium and vitamin D. Dairy products, leafy green vegetables (e.g. kale, broccoli), fortified plant-based milk alternatives, and calcium supplements (under medical supervision) may help meet calcium needs. Vitamin D can be obtained from sunlight exposure and certain foods like fatty fish and fortified dairy alternatives.

Monitor portion sizes: Ensure that portion sizes are appropriate to maintain a healthy weight. Calorie needs may vary depending on an individual’s level of physical activity and any mobility limitations.

Stay hydrated: Drinking sufficient fluids is essential for overall health. Water is the best choice, but herbal teas, soups, and other non-caffeinated beverages can also contribute to hydration.

Consider dietary modifications: If there are specific foods that worsen symptoms or cause discomfort, it may be necessary to modify the diet further. Working with a healthcare professional can help identify potential triggers and develop an appropriate eating plan.