Explaining FOP to Children

Giving children the opportunity to process information is an important step in reducing confusion and anxiety about new changes. These resources aim to empower parents and caregivers with age-appropriate information and tools to guide discussions with children after an FOP diagnosis. Helping your child understand what FOP is and how it may impact their life equips families with a solid foundation to navigate FOP progression and the life-shifting changes it may impose.

Click here to access Explaining FOP to Children resources for children with FOP AND their siblings.

FOP Oral Health

Managing the risk of oral disease is essential for patients with FOP. Good oral health not
only enhances our ability to speak, smile, eat, breathe, and show our emotions through
facial expressions, but it can also help minimize risks of inflammation, flare-ups and
potentially invasive dental treatments that could exacerbate complications of FOP and
have long-standing consequences. The following recommendations have been provided
as general guidelines for individuals with FOP to use starting in early childhood and
extending through adulthood. Prevention is the key. Adapting these guidelines as
life long habits will give individuals with FOP the best chance at living a life free from
oral disease, and increased enjoyment from an overall higher quality of life.

Click here to access Oral Health resources for individuals with FOP.

FOP Lung Health

Having strong respiratory health is crucial for everyone, especially those with FOP.
As FOP restrictions increase, the buildup of extra bone and changes in body positioning
can restrict the movement of muscles around the lungs and heart. This limits chest
expansion and causes additional breathing difficulties. To promote continued lung
health and improve the chances of overcoming respiratory illness as FOP progresses,
individuals with FOP should review the provided guidelines with their local health
care provider. These resources offer general recommendations and can be
implemented at varying degrees of FOP progression. Especially regarding lung
health, being proactive in healthcare management is essential for overall well-being.

Click here to access Lung Health resources for individuals with FOP.

FOP Skin Health

The skin is the first barrier of your body that protects you from the environment,
including bacteria and fungi, and is connected to all other organs and can give us
clues about internal diseases. While there have not been any formal studies,
there are some links between skin issues and FOP, and knowing how to prevent and address skin issues when they arise is critical to limiting the impact on overall health.

Click here to access Skin Health resources for individuals with FOP.

FOP and Safety

Safety is an important aspect of daily living for all individuals with FOP. To access resources related to preparing for a medical emergency, working with caregivers, home safety and home modifications, explore our Advocacy Series 2025 topic, Safety and FOP.

Click here to access general safety resources for individuals with FOP.

Seating and mobility equipment can offer you independence in your daily life and open your world to many possibilities. However, using this equipment incorrectly or unsafely can place you at risk for falls or injury. Working with an expert is an essential first step to help you establish safety habits and maintain your equipment in good working order.

Click here to access Wheelchair Safety and FOP resources for individuals with FOP.

FOP and Vaccinations

Vaccinations can help individuals with FOP live healthier, more stable lives by reducing the risk of infections that could complicate or worsen existing issues related to FOP. However, because many immunizations are traditionally given intramuscularly, knowing the latest research and disease-specific recommendations is a critical part of the decision-making process as you navigate childhood immunizations and annual vaccines. 

Click here to access resources for navigating vaccinations and immunizations with FOP.

FOP and the Flu

Influenza (“the flu”) is a contagious viral infection that affects the respiratory system, including the throat, nose, and lungs. It is a major cause of morbidity and mortality worldwide and is especially dangerous for those with FOP. Flu season presents many challenges for individuals with FOP and their families. Individuals with FOP must receive the flu vaccine through special methods and there are several ways family members can help keep their loved ones safe during flu season.

Click here to access resources related to the flu and FOP.

FOP and Pain Management

Managing FOP pain requires a variety of tools and techniques. In 2023, the IFOPA hosted the pain management series to explore medications, pain psychology approaches, physical therapy techniques and aromatherapy (a form of complementary or integrative medicine) as tools to decrease pain. At the end, the FOP community heard from an FOP pain researcher who  shared what FOP pain research has taught us and how we can apply that research to our day-to-day life. 

Click here to access resources related to pain management and FOP.