Analysis of data from the Swiss neuromuscular disease register relating to 141 patients with SMN1-related proximal spinal muscular atrophy (SMA) shows that :
- 28 had type I SMA, 59 type II, 51 type III and three of undetermined type because they were treated in the asymptomatic phase;
- 48% of the 67 adults, 62% of the 26 patients aged 12 to 18, 39% of the 28 children aged 6 to 12 and 10% of the 42 children under 6 had chronic pain;
- most often in the legs, back or hips;
- 44.8% of adults and 81.8% of adolescents were taking painkillers for their chronic pain;
- in addition to adolescence, being female, having had scoliosis surgery and retractions, and not being able to walk were associated with the presence of chronic pain.