Care Management for the FOP Body

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
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

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.

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

 

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