10 Tools for Navigating Life With FOP

FOP is a life-changing diagnosis but it doesn’t have to dictate every aspect of day-to-day life. With these resources, you can be proactive about managing your care and creating an environment that supports you in living life to the fullest with FOP.

1. CARING FOR THE FOP BODY Proactive management and care are critical to limiting the impact of FOP across various parts of the body. Our growing library of resources includes information for oral, lung, skin, and feminine health issues and care.

2. PREPARING FOR EMERGENCIES The best time to prepare for an emergency is before it happens. Access and personalize important resources to optimize care during emergency situations.

3. CONNECTING WITH THOSE WHO UNDERSTAND We often hear that ending isolation brings huge relief during diagnosis or intense FOP progression. We know other families who have been through what you’re experiencing and offer a variety of opportunities to connect individuals and families.

4. STAYING UP-TO-DATE ON RESEARCH AND CLINICAL TRIALS The end goal for every family is a cure for FOP but the only way to achieve it is through clinical trials and research. Find the latest information about advances in FOP research and drug development.

5. IMPLEMENTING ADAPTATIONS Until there is a cure to stop FOP progression the IFOPA is committed to helping families navigate day-to-day life with as much independence and opportunity as possible. Find tools and adaptations to engage in life activities and minimize caregiver assistance through our Ability Toolbox and Kaplan Quality of L.I.F.E. Award Programs.

6. MANAGING PAIN Whether FOP is actively causing new pain, or positioning and previous bone growth have created chronic pain, it often takes a multidisciplinary approach to see improvement. We feel fortunate to have connections to resources which provide the newest insights for navigating pain management.

7. UNDERSTANDING FOP AT AN EARLY AGE The better children are able to make sense of the things they are nervous about or fearful of, the more positively they can cope with stress and challenges that arise. Access our resources for explaining FOP to children to help your child and their peers.

8. STAYING IN THE KNOW At times, it’s impossible to stay caught up on emails or articles that require substantial time to read and understand. Luckily, you can follow the IFOPA’s social media channels to receive daily insight on the latest (and greatest!) resources for life with FOP. Explore our Facebook, Twitter (X), and Instagram.

9. TAKING ACTION, CREATING CHANGE For some people, the best way to cope with challenging times is to act. We’re here to help you experience the positive effects of creating change by channeling your energy into FOP awareness and/or fundraising to support FOP research.

10. LEARNING ACROSS THE LIFESPAN Ultimately, it’s up to each individual or family to access and implement the above-mentioned resources in their daily lives. To help families we’ve created programming that focuses on the skills needed to become a strong advocate for your or your loved one’s needs.