Standards of care affect the length and quality of life for people living with Duchenne muscular dystrophy (DMD). DMD patients, caregivers and families should be informed and involved in their own care and treatment, and work together with healthcare professionals for the best outcomes.
Download the booklets below and watch our webinars for more information on the recommended standards of care. If you'd like to be involved in reviewing future resources, express an interest in becoming a DMD Care UK patient representative.
For more information and support for families, visit Duchenne UK's website.
The booklets below are based on DMD Care UK's clinical recommendations for different areas of care. They are designed to help DMD parents, families and patients understand the care they should receive.
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 DMD patients and female carriers.
Learn what to do in an emergencies, including broken bones, gastro-intestinal problems, COVID-19 and minor-severe illnesses
Learn what you need to do with steroids in an accident, emergency or illness, including how to give a hydrocortisone injection
Understand the best care for bones, delayed puberty, and managing adrenal insufficiency
We want to make sure our resources meet the needs of DMD patients and their families. Please get in touch if you have any questions or comments, or express an interest in joining our patient review board.
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DMD Care UK - a Duchenne UK collaboration