Like all the HDCT a number of different specialists, allied health professionals, and social care teams are likely to make up the multidisciplinary group managing the more complex cases. There is no cure for OI, but, in the future, gene therapy (where there is a specific gene problem identified) may become a reality. Advice focuses on preventing or minimising the physical risks of fractures, and treatments on assisting individuals to achieve as much mobility as possible, maximising their independence and general health.

Advice includes:

  • Physiotherapy can help improve muscle tone and fitness (see P.E. and sports advice below). Respiratory exercises are important for those with reduced chest movement.
  • Occupational therapy. Advising on the practicalities of day to day living both before and after fractures. Good quality and properly assessed and fitted equipment is important. A good example is poor seating and poor posture e.g. at a school desk or in the office.
  • Safe exercise such as swimming (see below)
  • Teaching parents and other carers techniques for safe handling, protective positioning, and safe movement of kids.
  • Mental-health counseling may be helpful for those having difficulty coping with pain and disability.

Treatments include:

Pain management. Standard pain medication might be need either short term (‘acute’) following a fracture, or long term (‘chronic’) because of bone, limb, rib or spinal deformity.

Splints, supports, and mobility aids. Casts, splints or wraps are used for broken bones. Braces may be required to support wrists, knees or ankles for example. Mobility aids such as canes, walkers, or wheelchairs and other equipment or aids for independence may be needed to compensate for muscle weakness and bony deformities.

Bisphosphonate medication may be helpful in patients with OI. These bind to, and stabilise bone. These are commonly used first line in the treatment of Osteoporosis too.

Orthopaedic surgery is often required in both children and adults. This may be, for example, the treatment of individual fractures, deformities of the long bones of arms and legs, or curvature of the spine.

Physical education and exercise. This is often an area of concern for individuals, parents and schools. Playing certain sports and undertaking certain exercises may increase the risk of fracture. There are, however, many activities that children and adults with OI can participate in safely. There are also recommendations that make playing sport safer. These include:

  • Encouraging swimming and water-based exercises as non-contact activities that are a great way to improve muscle strength and fitness.

  • Racket sports. Some individuals may need a lighter racket or use a softer ball and play using both hands etc.

  • Types of dance are safe activity. But, high impact moves, tugging, pulling or lifting should be avoided.

  • As with any hypermobility condition individuals may be more prone to sprains etc.

  • The wearing of supportive training shoes rather than plimsolls, and the use of support straps or taping is recommended when exercising.

  • Some gym activities at school can be adapted by, for example, using lighter weight apparatus, supervised use of frames etc when exercising off the ground, and balance / strengthening exercises such as walking along a line on the floor instead of walking along a gym bench.

  • Wearing a bright or different coloured top may make children/young people more visible to their teacher / trainer and others both assisting supervision and helping to avoid collisions between people.

  • Many sports have been adapted for wheelchair users.

Examples of the higher risk activities that one would recommend should be avoided or undertaken cautiously by individuals with OI include:

  • Contact sports where there will be collisions or falls e.g., football, rugby, judo and other contact marshal arts, basketball, hockey etc.

  • Trampoline, jumping, or forceful twisting in, for example gymnastics etc.

  • Riding – this might cause repetitive stress though the spine.