A big step forward for Lola's JDM

How important a role does physiotherapy play in a patient's treatment? We spoke to Sue Maillard, Specialist Physiotherapist at GOSH, who has been providing physiotherapy to patient Lola who features in Paul O’Grady’s Little Heroes and has severe juvenile dermatomyositis (JDM). Sue is a Specialist Physiotherapist in Paediatric Rheumatology and Msk Pain Management at Great Ormond Street Hospital. Her role sees her supervise the intensive physiotherapy programme at GOSH, which focuses on providing a high level of physiotherapy (2.5hrs per day) as well as teaching young people and their families how to self-manage their pain and condition.

The physiotherapy team at GOSH also provide an outpatient service in a clinic setting, providing assessment and a home treatment programme, and offer physio for in-patients.

Lola, aged 13, who features on Little Heroes has severe juvenile dermatomyositis (JDM) a childhood illness affecting the skin (dermato) and muscles (myositis) and frequently other parts of the body including joints, lungs, gut and blood vessels. JDM is a rare condition, affecting about one in a million children each year in the UK.

Lola has required physiotherapy to help regain her mobility. Sue explains:

“Exercise is the only way that muscles are stimulated to recover, repair and to grow stronger and fitter.

"Lola was understandably terrified having lost all of her independent mobility, but she worked hard and was proud of herself as she regained her strength and function. The physiotherapy provided Lola with the treatment she required to go from immobile back to walking and functioning independently”

“Stretches and a graded exercise programme is vital in promoting the recovery of the muscle function, the correct movement pattern, and the return to function and independence.”

Lola has regained her independent mobility and function, and now will continue to complete a home exercise programme in order to maintain her strength and function to return to school.

The home exercise programme is key as it is very different to sport and physical activity. Sue explains: “It is designed to ensure the correct muscles stay strong in order to protect the joints and ensure the biomechanics of the body are working effectively.”

Looking at why she chose to be a physio at GOSH, Sue shares: “I wanted to be part of an organisation that had a worldwide reputation as I wanted to develop my expertise in physiotherapy to also be of world class standard, to be able to help many children and their families as well as teach others so that this knowledge could be shared further.”

“The patients are awe-inspiring and fabulous and their bravery and personalities make every day unique and special. I learn something new all of the time.”