Article published Open Source in: Orphanet Journal of Rare Diseases (2018), 13: 158
Authors: Brigitte Mueller, Raoul Engelbert, Frances Baratta-Ziska, Bart Bartels, Nicole Blanc, Evelise Brizola, Paolo Fraschini, Claire Hill, Caroline Marr, Lisa Mills, Kathleen Montpetit, Verity Pacey, Miguel Rodriguez Molina, Marleen Schuuring, Chantal Verhille, Olga de Vries, Eric Hiu Kwong Yeung & Oliver Semler
Content:
What is This Article About?
The article provides international guidelines on physical rehabilitation for children and teens with Osteogenesis Imperfecta (OI), also known as “brittle bone disease.” The recommendations aim to help children strengthen their muscles, improve mobility, and achieve more independence while reducing risks like fractures.
Key Goals of Rehabilitation:
Promote Strength and Mobility:
- Exercises and therapies focus on building muscles, improving balance, and making everyday movements easier.
- Therapy plans are tailored to each child’s needs based on the severity of their OI.
Encourage Independence:
- Therapists help children and families learn ways to do daily tasks like dressing, bathing, and eating safely and effectively.
- Using tools like braces, walkers, or wheelchairs can make moving around and doing activities easier.
Reduce Fear of Movement:
- Many families worry about causing fractures, but therapy helps build confidence by teaching safe ways to move and play.
Key Areas of Focus:
- For Infants:
- Early therapy helps babies with OI reach developmental milestones like sitting and crawling.
- Parents learn safe ways to hold, feed, and move their baby to avoid injuries.
- For School-Aged Children:
- Physical therapy includes exercises to strengthen muscles, improve posture, and build endurance.
- Children are encouraged to participate in school and sports activities with proper safety measures.
- For Teens:
- Therapy prepares teenagers for greater independence, helping them manage daily tasks and transition to adult care.
- Maintaining physical activity is important to stay healthy and avoid weight gain.
What Tools and Strategies Are Used?
- Exercises: Gentle stretching, strengthening exercises, and activities like swimming or cycling.
- Assistive Devices: Braces, custom shoes, walkers, or wheelchairs to aid movement and reduce fatigue.
- Home Modifications: Simple changes like grab bars in the bathroom or ramps can help with safety.
- Caregiver Education: Parents and caregivers are taught how to support their child’s physical and emotional well-being.
Key Takeaways:
- Rehabilitation is a Team Effort: It involves doctors, therapists, and families working together to create a plan that fits the child’s unique needs.
- Therapy Builds Confidence and Skills: Children gain strength, independence, and a better quality of life with regular therapy and support.
- Safe Activity Is Encouraged: Moving and playing safely is important for muscle and bone health, even if fractures happen occasionally.
- Adaptations Can Help: With the right tools and support, children with OI can participate in everyday activities and enjoy life.