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Duchenne muscular dystrophy (DMD) is a genetic disorder characterised by progressive muscle degeneration and weakness. DMD is a multisystem disorder with affected men developing skeletal muscle weakness which results in decreased mobility, scoliosis, impaired pulmonary function and respiratory failure. In addition, due to the advances in ventilatory support, we are now seeing patients with progressive cardiomyopathy and heart failure and increasingly we are aware of the disease effects in the gut, renal and endocrine systems. As a result, young men are now living longer (many surviving into their 30s) but with a significant symptom burden and may benefit from specialist palliative care involvement for symptom control.1
Young men attending a multidisciplinary DMD clinic in Southampton frequently report significant pain which impacts on their activities of daily living and quality of life.2 Pain was also seen as the most prevalent symptom for a similar group of young men with DMD attending an adult palliative care clinic.3 The pain described by the young men is often mixed in aetiology—musculoskeletal, neuropathic and visceral and may be related to scoliosis, dislocated or dislocatable hips and prolonged periods in the same position in their chairs.
There are multiple factors to consider when treating their pain:
Although they have a shortened life expectancy this …
Contributors This is a joint piece of work by AB and MB who have been involved in all aspects of the work. No other contributors have been involved in the work.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.