Patient and Family Guides to help you get the best care
Through Duchenne Care UK, we've worked with leading clinicians to develop clear, practical guides to help you and your family understand the best care at every stage.
How the Duchenne Care UK Patient and Family Guides will help you
They explain the latest care recommendations agreed by expert clinicians and the Duchenne community, and cover key areas like bone health, physiotherapy and occupational therapy, corticosteroid treatment, and more.
They give you the knowledge to make informed decisions and work with your care team, and help you feel confident about the care you or your child should receive.
Patient and Family Guides
The booklets below are based on Duchenne Care UK's clinical recommendations for different areas of care. They are designed to help Duchenne parents, families and patients understand the care they should receive.
Email info@duchenneuk.org if you'd like to be sent hard copies of the guides.
Understand how to keep the respiratory system healthy for as long as possible through early monitoring and ongoing management.
Learn how to manage adrenal insufficiency, a side effect of steroids where the body cannot produce enough cortisol during illness and accidents.
Understand how steroid medicines can cause boys’ puberty to be delayed, and how this can be managed with testosterone treatment.
Understand how regular heart checks and preventative medication are essential for protecting the heart in Duchenne patients and female carriers.
Learn how bone health is monitored, how to help prevent and treat osteoporosis, and how to manage vertebral fractures.
Guidance on the best standards of physiotherapy and occupational therapy care needed at different stages of Duchenne.
Guidance for patients and carers on the benefits and side effects of corticosteroid use in Duchenne.
Guidance on treating people with Duchenne in emergency situations.
Guidance on orthopaedic care for people with Duchenne, including the management of long bone fractures and contractures.
Vamorolone for Duchenne
Prepared by Michela Guglieri and Cathy Turner, John Walton Muscular Dystrophy Research Centre, Newcastle University and Newcastle upon Tyne Hospitals Trust.
Reviewed and approved by members of the Corticosteroid Working Group and the Family Focus Group of Duchenne Care UK.
