Living with Fibrodysplasia Ossificans Progressiva (FOP) means facing daily risks. But some of the most powerful protections come from simple tools. In August, the FOP Trust focused on teaching families how to use helmets and spirometers effectively.
Why Helmets Matter
Even a small fall can be dangerous for someone with FOP. Head injuries can trigger flare-ups or cause lasting damage. Helmets protect against these risks.
Families like Pranav’s now use helmets every day, especially for children with movement challenges. This simple habit greatly reduces the chances of injury.
The Role of Spirometers
Breathing can become harder over time for people with FOP. Spirometers help keep lungs strong.
By using them daily, patients like Sanskriti maintain better lung capacity. Some combine breathing exercises with singing to make it more enjoyable.
Easy Access and Guidance
The FOP Trust shares step-by-step buying guides for helmets and spirometers. These are sent via WhatsApp groups and discussed during consultations. This ensures that even families in rural areas can get quality tools and learn how to use them.
Always Be Prepared
The Trust encourages families to keep these items in an emergency kit. When flare-ups or accidents happen, quick action can prevent bigger problems.
Having the right tools ready saves time and reduces stress during emergencies.
Building Long-Term Habits
Education doesn’t stop after one session. Through regular follow-ups and group messages, families are reminded to make these tools part of daily life. Over time, these habits protect health, build confidence, and give families peace of mind.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/
