ORTHOPAEDIC SURGEON

Orthopaedists specialise in the surgical and nonsurgical treatment of conditions of the bones, joints, and soft tissue. Individuals with spinal muscular atrophy may be at risk of certain orthopaedic issues for which an orthopaedist may recommend postural support (bracing) or surgery to treat.¹

PHYSIOTHERAPIST

Stretching and strength training is an important component of the preventive care approach. Physiotherapists or other specialists may evaluate the range of motion, muscle strength, and mobility of individuals with SMA. They can also recommend exercises or assistive devices to help maintain the best posture for breathing and eating.^1,2

GENETIC MEDICAL COUNSELLOR

Genetic counsellors can provide information on the consequences and genetic background of spinal muscular atrophy. They can advise families on the likelihood of developing or transmitting the disease, suggest genetic carrier testing for the parents and other children in the family, and the available options in management and family planning.

OCCUPATIONAL THERAPIST

While a physiotherapist can assist with increasing overall mobility through exercise and assistive devices, an occupational therapist helps individuals increase their independence in specific everyday tasks like dressing, bathing, or handling utensils. They may recommend adaptive equipment or home modifications, such as the installation of ramps or widening of doorways.

NURSE SPECIALIST

A nurse specialist can be an important first-line caregiver given the risk of respiratory illness and works closely with children and families in hospitals. They can provide you with educational materials and connect you with support groups such as SMA Europe to improve your understanding of the disease.

DIETICIAN

Nutrition is important for individuals with spinal muscular atrophy in order to promote growth and motor function. Some individuals may experience over- or undernourishment, which can affect bone strength, and overall mobility. Experts suggest working with a registered dietitian or nutritionist who is familiar with the nutritional needs of people with SMA.^1,3

PAEDIATRIC NEUROLOGIST

Paediatric neurologists are often the first doctors to meet with parents of children suspected of having spinal muscular atrophy. They specialise in the diagnosis and treatment of disorders of the nervous system (brain, spinal cord, muscles, nerves) and are a vital part of the care team.¹

PAEDIATRIC PULMONOLOGIST

Spinal muscular atrophy can affect a child’s ability to breath effectively and breathing problems may require treatment with medicines or specialised supportive equipment. Paediatric pulmonologists work with families to help assess and monitor a child’s breathing, as well as developing treatment plans. Respiratory support is especially important when a child is ill or if surgery is scheduled.⁴

CHILD PSYCHOLOGIST

Child psychologists can provide counselling and guidance on a wide range of psychological and social problems that may arise, including:

• Emotional and developmental problems
• Coping with stresses related to school
• Psychological difficulties for siblings of children with SMA

PAEDIATRIC ANAESTHETIST

Paediatric anaesthesiology is another important aspect in the care of children with spinal muscular atrophy who may have to undergo surgery such as tracheostomy or spinal stabilisation. They handle planning of care before, during, and after surgery, as well as delivering anaesthesia.

PAEDIATRICIAN

A paediatrician is a medical doctor who has been trained to diagnose and treat a broad range of childhood illnesses, from minor health problems to serious diseases.