Is it advisable to do exercise when affected by Fibrodysplasia ossificans progressiva? Which activities would you suggest and how intense should they be?

Fibrodysplasia ossificans progressiva (FOP) is an extremely rare genetic disorder characterized by the abnormal growth of bone in soft tissues such as muscles, tendons, and ligaments. This condition leads to progressive immobility and can severely impact a person's quality of life. While exercise is generally beneficial for overall health, it is crucial for individuals with FOP to approach physical activity with caution.

Consulting with a healthcare professional who is knowledgeable about FOP is essential before starting any exercise regimen. They can provide personalized guidance based on the individual's specific condition and limitations. It is important to note that FOP is a progressive disorder, and the severity can vary from person to person.

Low-impact exercises that do not put excessive strain on the joints and soft tissues are generally recommended for individuals with FOP. These activities help maintain flexibility, muscle strength, and cardiovascular health without exacerbating the condition. Some suitable exercises include:

• Swimming or water aerobics: The buoyancy of water reduces the impact on joints while providing resistance for muscle strengthening.


• Cycling: Using a stationary bike or recumbent bike can be a safe option as it minimizes stress on the joints.


• Yoga or gentle stretching: These activities can help maintain flexibility and improve posture.


• Tai chi: This low-impact martial art focuses on slow, controlled movements that can enhance balance and coordination.

Intensity of exercise should be carefully monitored to avoid triggering flare-ups or accelerating the progression of FOP. It is crucial to listen to the body and avoid any movements that cause pain or discomfort. Exercise sessions should be started at a low intensity and gradually increased over time, if tolerated well. Regular breaks and rest periods are important to prevent overexertion.

Adaptive equipment may be necessary to ensure safety and comfort during exercise. For example, using supportive braces or splints can help stabilize joints and reduce the risk of injury. Working with a physical therapist or an exercise specialist experienced in FOP can provide valuable guidance on appropriate equipment and modifications.

Monitoring and communication with healthcare professionals is crucial throughout the exercise journey. Regular check-ups can help assess the impact of exercise on the condition and make necessary adjustments to the routine. It is important to report any changes in symptoms or new limitations promptly to ensure the exercise plan remains suitable.

Overall, exercise can play a role in maintaining physical function and improving well-being for individuals with FOP. However, it is essential to approach it with caution, seek professional guidance, and adapt the activities to the individual's specific needs and limitations. Prioritizing safety, listening to the body, and avoiding high-impact movements are key to ensuring a beneficial exercise experience while managing the challenges of FOP.