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. Below is a basic guide to services and key safety information. 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
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Purposes of Aquatic Therapy:
- Allows individuals to perform an active range of motion
- 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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International Clinical Council on FOP (ICC) is an autonomous and independent group of 21 internationally recognized physicians who are clinical experts in FOP from 14 nations (Argentina, Australia, Brazil, Canada, China, France, Germany, Italy, Japan, Netherlands, South Africa, South Korea, United Kingdom and United States) and six continents (Africa, Asia, Australia, Europe, North America and South America). The ICC was established to coordinate and consolidate a global voice for the best practices for clinical care and clinical research for people who suffer from FOP. The Council was officially established and its Constitution unanimously ratified on June 21, 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 health care 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)
Additional Support
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.
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.
