THE SMA CARE

TEAM

The characters shown are real patients and the required consent to use their stories has been obtained from the patients and families. Photographs are for illustrative purposes only.

CARE TEAM ROLES AND
RESPONSIBILITIES

The current guidelines of care for individuals with spinal muscular atrophy suggest that care is best accomplished with the help of many specialists and primary care providers.

Because every person with spinal muscular atrophy is different, the members, as well as their level of involvement, may change over time according to individual needs and circumstances. Care will generally be coordinated by one of the doctors – usually the neurologist.1

The following is an example of a care team for educational purposes only.

Care team members may vary for individuals with spinal muscular atrophy.

Click on a care team member to learn more about their role:

surgeon

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

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

geneticist

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

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

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

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

Click to learn more about specific care team for infants and children:

PAEDIATRIC NEUROLOGIST

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

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 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 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

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.

Paving the way for awareness and support.

Biogen is working with a number of organisations dedicated to individuals living with spinal muscular atrophy (SMA).

CONNECT

to learn more about about how to be part of the SMA community

Discover Communities

The characters shown are real patients and the required consent to use their stories has been obtained from the patients and families. Photographs are for illustrative purposes only.

References

1. Mercuri E, et al. Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscl Disord 2018;28(2):103-115.

2. Cure SMA. Nutrition Basics – Fostering Health and Growth for Spinal Muscular Atrophy. 2016. Available at: http://www.curesma.org/documents/support--care-documents/nutrition-basics.pdf. Accessed January 9, 2017.

3. Oleszek JL, Caire ML. Kugelberg Welander muscular atrophy treatment & management. Medscape. Available at: http://emedicine.medscape.com/article/306812-treatment. Updated April 27, 2016. Accessed April 28, 2016.

4. Finkel RS, et al. Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscul Disord 2018;28(3):197-207.