FOP impacts the whole person and being aware of possible complications and preventative steps to take to minimize impacts is a key role families play in being a role of the health care team to receive optimal care. We hope you'll explore the different areas of the body and mind where the IFOPA has created resources to support families in their journey with FOP.
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 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. 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, Click here to access Skin Health resources for individuals with FOP. |
FOP and Safety |
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. More general safety resources coming soon! |
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. |