The use of social media parent groups is invaluable for parents whose children have DMD. They provide a great source of emotional and practical support. Parents can exchange views and learn experiences from other families. This enables them to feel supported and not alone, even if they are not physically close, they can build relationships with those going through the same difficulties. A study of families found a preference for online parent support via Facebook over face-to-face support and the reported benefits of parent to parent support remains consistent across time (1).

Although parents will have a lot of experience when their own child is unwell or advice on what medication regime they feel works best for their child, it is essential that for all medical related queries or problems that a health professional is approached.

Consultation rates in GP surgeries has increased over the last 10 years, the numbers attending A&E has increased by an even higher margin within A&E departments, this may be linked to the increased pressure on GP surgeries (2). Over the last decade online health-seeking information has dramatically increased, it represents one of the fastest growing areas of internet use (3).  While some of the advice given out on social medical groups were deemed correct by medical professionals there was also incorrect and potentially dangerous advice alongside this.

When requiring medical advice, it is essential that parents seek professional care. This includes advice from NHS 111, local out of hours service, GP or A&E. Although social media groups provide a great amount of support for parents it should be reiterated that they should not replace seeking professional medical advice.

 1. If You Build It, Will They Come? Patterns of Internet-Based and Face-To-Face Participation in a    Parenting Program for Military Families. Doty JL, Rudi JH, Pinna KL, Hanson SK, Gewirtz AH J Med Internet Res. 2016 Jun 22; 18(6):e169.

2.     NHS England Analytical Service Improving General Practice–A Call to Action: Evidence Pack. 2013. Aug, [2015-08-18]. webcite

3.    Office for National Statistics. 2013. Aug 08, [2015-08-18]. webcite Internet access-households and individuals, 2013

Article created for Action Duchenne by a Neuromuscular Research Nurse