Therapies can be beneficial to children (and adults) with fibrodysplasia ossificans progressiva (FOP) when done safely. These services can take place inside the school or in an outpatient clinic. These therapies can also be carried out at home in countries where home healthcare services are available. This can be especially important for people who have difficulty with mobility. Below is a basic guide to services and key safety information. This information has been compiled with the assistance of International Clinical Council on FOP Member, Dr. Genevieve Baujat. Additionally, Family & Provider Support Coordinator Melissa Davis is available via phone, text, WhatsApp, social media messenger, and Zoom to help you with specific needs, requests, and questions. Reach out to schedule a time to meet with her or to connect her to your child's therapy team—[email protected] or + 1 (605) 877-5289.
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Purposes of Physical Therapy:
- Improving gait and balance to reduce the risk of falls.
- Evaluation and training with mobility devices as FOP progresses, including wheelchair assessments or referrals.
- Visual field training for when neck mobility is limited
- Maintain existing joint mobility and muscular condition as much as possible between flare-ups
- Promote lung capacity and improve diaphragm function
- Aid in vascular drainage
- Training and development of home exercise programs that can be carried out independently
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Purposes of Aquatic Therapy:
- Allows individuals to perform an active range of motion in a less restrictive environment
- Provide a safe and low-impact environment for cardiopulmonary and resistive exercise
- Facilitate pain relief
- Please note: modified lifts, elevators, or ramps may be necessary for pool entry and exit
- Purpose of Occupational Therapy: Identifying and training, with assistive devices, for independence with activities of daily living (ADLs) at home and school
Key Safety Points for Physical Therapy, Occupational Therapy, and Aquatic Therapy
- No passive range of motion
- Manual therapy should typically be avoided unless it is very gentle, with the purpose of lymphatic drainage
- Sessions should be slow-paced, not super tiring (and short)
- Avoiding a fall is critical
Medical Guidance
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The International Clinical Council on FOP (ICC) is an autonomous and independent group of internationally recognized physicians who are clinical experts in FOP. The ICC shares best practices for clinical care and research and is available for consultation. The ICC was established in 2017. Learn more at iccfop.org |
Click here to access the FOP Treatment Guidelines
We encourage you to review the following sections and share these specific page numbers for reference with your local healthcare team:
- Injury Prevention in FOP: Section 3 (page 62)
- Rehabilitation Issues in FOP: Section 32 (page 117)
- Aids, Assistive Devices, and Adaptations: Section 33 (page 118)
HCP Education Links: FOP is one of the more than 7,000 rare diseases in the world. We are pleased to connect you to FOP awareness and education programs you can participate in online. Some of these programs offer continuing medical education (CME) credit.
Additional Support From Physical Therapy Experts
Physical Therapy Tutorial Video from FOP France: Learn how physical therapy is conducted with FOP patients through the lifespan at Necker Hospital in Paris, France.
2020 IFOPA Family Gathering Complimentary Therapy Panel: Learn from physical therapist, Dr. Michel Lemoine, who works with FOP patients at Necker Hospital in France. View a PDF version of his slides.
