Often children also become uncharacteristically miserable and fractious and they may complain of tummy pain. They develop skin changes which vary from an obvious reddening over the cheeks, eyelids, upper chest, knuckles, elbows and knees to a very faint ‘violet’ discolouration over the eyelids which may not be obvious even to the most discerning parent. There may be some swelling around the eyes and sometimes the skin looks thin and shiny. The weakness mainly affects the large muscles around the hips and shoulders resulting in increasing difficulty with walking, climbing stairs, getting up from the floor and lifting the arms.
Many children complain of difficulty in swallowing and their voice may become ‘nasal’ in quality. Often the initial symptoms are attributed by parents and doctors alike to a minor viral infection, or if misery is a very prominent feature, to the child being upset or just ‘difficult’.
Although you may worry that this has led to a delay in diagnosis, it does not prejudice your child’s chance of responding to treatment. The diagnosis is a difficult one even for experts to make and the condition is so uncommon that most general practitioners will never see a case.