Understanding the factors that impact quality of life in people with FSHD and LGMD

Living well with a muscle wasting condition is so important. However, there has been little research into what can affect quality of life for people living with facioscapulohumeral muscular dystrophy (FSHD) and limb-girdle muscular dystrophy (LGMD). Previous research has suggested that pain, poor sleep, fatigue, depression, anxiety and unemployment may contribute to lower quality of life. But much of this research only looked at these factors in men with the conditions. A more complete picture of what impacts quality of life for everyone with FSHD and LGMD is needed.

Dr Morse and team will investigate the factors that impact quality of life for people with FSHD and LGMD. The investigation will particularly focus on the impact of social exclusion – where people may have become cut off from full involvement in wider society.

People affected by FSHD and LGMD will be at the heart of this project, to understand the unique, lived experience and subtle differences that can impact quality of life. Working together with people affected by the conditions, the researchers will develop an online survey to build a picture of the factors that affect quality of life. The team will also develop a guide for interviewing people with FSHD and LGMD that could be used to find out more about their experiences and quality of life.

Understanding more about what can impact quality of life in people with FSHD and LGMD could allow researchers to develop ways to improve it. This study is the first stage of a larger project that aims to find ways to improve quality of life in people with FSHD and LGMD. The team first need to understand the factors that impact quality of life, so they can develop methods to target the factors that negatively impact it.