Talk 3: Nutritional Intake, muscle mass and mobility

Michelle Wood (Specialist Physiotherapist, Great Ormond Street Hospital) looks at the many challenges to physiotherapy in EB, e.g. bandages restrict movement, posture may limit physiotherapy and how attempts are made not to further damage skin. Physiotherapy has numerous aims including improving range of movement, weight bearing to promote muscle and bone mass. Each patient is different and needs individual assessment. Emphasis is on attainable goals, where exercise is enjoyable to help patients achieve their maximum potential.

Mary Fewtrell (Reader in Childhood Nutrition, Institute of Child Health) presents information on bone health and body composition in EB. She reports on her studies using dual x-ray absorptiometry identifying lower bone mass and a high incidence of vertebral fractures in children with EB at GOSH. She further highlights the difficulties in children with chronic disease of maintaining fat free mass even when nutritional support is adequate.