Metabolic specialists at Salford Royal have launched a new study which aims to reduce joint pain and improve mobility for people with the rare condition Hunter syndrome.
Hunter syndrome is also known as Mucopolysaccharidosis type II (MPS II) and is a slowly progressive inherited metabolic disorder. It mainly affects men and is one of the lysosomal storage disorders, causing sugar molecules to accumulate inside lysosomes, a part of the body’s cells. The storage material can damage organs and tissues throughout the body.
As well as neurological, heart and lung problems, people with the condition often experience musculoskeletal pain which can’t be easily managed with painkillers.
The new pilot study is assessing using hydrotherapy – exercise therapy in warm water – as a way of helping patients control pain and improve their mobility.
It’s a multidisciplinary programme involving consultants in metabolic medicine and pain management as well as a specialist physiotherapist and research staff. The work is funded by a grant from the MPS Society and is sponsored by Northern Care Alliance – one of several ‘home-grown’ studies supported by the Trust’s Research & Innovation department.
Consultant in Inherited Metabolic Diseases Dr Karolina Stepien is the study’s Chief Investigator. She said: “We know that patients occasionally try hydrotherapy as painkillers often fail to control the chronic pain, a common complication of MPS II. In addition, they often have side effects and become ineffective in controlling the pain after a while.
“But there’s a lack of high-quality evidence on whether hydrotherapy is effective in MPS disorders. Our pilot study will assess whether weekly hydrotherapy sessions with a trained physiotherapist over 12 weeks help with pain and mobility and improve quality of life.
“If hydrotherapy proves to be useful in reducing our patients’ reliance on wheelchair use and need for painkillers, we hope to use it routinely as an additional treatment for MPS II and other MPS disorders”
The study will use the hydrotherapy pool at Salford Royal’s Rehabilitation Department. Pictured are Research assistant Mark Warburton, Dr Karolina Stepien, metabolic medicine research team manager Marie Meehan and specialist physiotherapist Andrew Oldham.
Dr Stepien is also the Lead Researcher for the Northern Care Alliance Research Collection’s inherited metabolic diseases biobank.