Myotonic dystrophy (DM) can affect all age groups, and people living with DM1 often have different symptoms at different ranges of severity. DM1 can also affect a range of systems such as brain, heart, endocrine system, eyes and both small and skeletal muscle, so symptom management requires multi-disciplinary care.

• In its most severe form, it can be present at or shortly after birth.
• Please note that the mothers and fathers and even grandparents may be affected but undiagnosed at the point of neonatal diagnosis and may need extra support to look after the affected child.
• Those that present in the neonatal period may have significant respiratory difficulties and poor head control, hypotonia, facial and bulbar weakness which can lead to feeding difficulties.
• Their low muscle tone does improve with age and despite significant developmental delay responds well to physiotherapy input.
• Most children will become ambulant by age 5 or 6 although they may need orthotic support and walking aids / wheelchairs for longer distances.
• Alongside motor delay these children have a facial myopathy with reduced facial expression and a tented shaped mouth which can impact communication speech and lip closure whilst eating.
• Learning delay is often significant and can result in them being unable to conduct simple respiratory tests such as forced vital capacity.
• Fatigue is common and pacing is important for this group.

The Myotonic Dystrophy Foundation provides a wealth of information about the extent of  symptoms in Myotonic Dystrophy and how it affects the body.

The MDA also provides information sheets on: Adult Onset DM1, Childhood Onset DM1and Congenital DM1