SPINAL MUSCULAR ATROPHY

IN ADULTS

After a diagnosis of spinal muscular atrophy (SMA) has been confirmed, it is important to stabilise the condition with the right care. There has been a lot of changes in the quality of care for people living with SMA.

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.

SMA IN ADULTS

SIGNS AND SYMPTOMS

Have you experienced muscle weakness? Less severe forms of SMA can emerge and be diagnosed in adulthood.1,2 Compared to childhood SMA, adult SMA may have milder symptoms, but is still progressive. Compared to SMA in childhood, the course of SMA in adults can be more insidious and difficult to recognise.3

SMA IN ADULTS

HOW TO GET DIAGNOSED

It is often difficult to diagnose SMA based on symptoms alone. Therefore, when a specialist suspects that you might have SMA they will order a genetic blood test that could confirm or rule out their preliminary diagnosis.4

SMA IN ADULTS

SMA CARE IN ADULTS

For people living with SMA, the health outcomes correlate with patient care and management of the disease. A range of care options and careful management of SMA can result in improved quality of life, compared to if left untreated.4,5

SMA IN ADULTS

DISEASE STABILISATION

Without intervention to stabilise the disease, people living with type II/III spinal muscular atrophy (SMA) will see a progression of their disease over time.6,7 Stabilising SMA is important to stabilise and maintain motor function for as long as possible.

SMA IN ADULTS

ADULTS LIVING WITH SMA

Once thought to be primarily a childhood disease, SMA can be diagnosed in adolescents, young adults and even those beyond 21 years of age.8

SMA IN ADULTS

SIGNS AND SYMPTOMS

Have you experienced muscle weakness? Less severe forms of SMA can emerge and be diagnosed in adulthood.1,2 Compared to childhood SMA, adult SMA may have milder symptoms, but is still progressive. Compared to SMA in childhood, the course of SMA in adults can be more insidious and difficult to recognise.3

SMA IN ADULTS

HOW TO GET DIAGNOSED

It is often difficult to diagnose SMA based on symptoms alone. Therefore, when a specialist suspects that you might have SMA they will order a genetic blood test that could confirm or rule out their preliminary diagnosis.4

SMA IN ADULTS

SMA CARE IN ADULTS

For people living with SMA, the health outcomes correlate with patient care and management of the disease. A range of care options and careful management of SMA can result in improved quality of life, compared to if left untreated.4,5

SMA IN ADULTS

DISEASE STABILISATION

Without intervention to stabilise the disease, people living with type II/III spinal muscular atrophy (SMA) will see a progression of their disease over time.6,7 Stabilising SMA is important to stabilise and maintain motor function for as long as possible.

SMA IN ADULTS

ADULTS LIVING WITH SMA

Once thought to be primarily a childhood disease, SMA can be diagnosed in adolescents, young adults and even those beyond 21 years of age.

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.

During the past decade, there has been a marked improvement in the ability of clinicians to manage the multiple respiratory, nutritional, orthopedic, rehabilitative, emotional, and social issues in most SMA patients.5

About Together in SMA

At Biogen, we are committed to supporting those with spinal muscular atrophy and their care team. Our hope for Together in SMA is that, by providing information, we can help you to get the most up-to-date care, and to help guide conversations with your doctors.

Here you'll find information about spinal muscular atrophy and its symptoms, insights into care options, and perspectives from people living with SMA, experienced caregivers and healthcare professionals on topics ranging from nutrition to adaptive equipment.

Biogen is working with a number of organisations dedicated to individuals living with SMA.

References

1. Montes J. Spinal Muscular Atrophy in Adults. [online] [cited 2020 Nov 30]. Available from: URL:
https://www.neuropt.org/docs/degenerative-diseases-sig/spinalmuscular-atrophy-in-adults.pdf?sfvrsn=8d2aae96_2.

2. Juntas Morales R, Pageot N, Taieb G, Camu W. Adult-onset spinal muscular atrophy : and update. Rev Neurol (Paris) 2017;173(5):308-19.

3. Wang CH, Finkel RS, Bertini ES, et al. Consensus statement for standard of care in spinal muscular atrophy. J Child Neurol 2007;22(8):1027-49.

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

5. Finkel R, 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.

6. Kaufmann P, et al. Prospective cohort study of spinal muscular atrophy types 2 and 3. Neurol 2012;79:1889-1897.

7. Rouault F, et al. Disease impact on general well-being and therapeutic expectations of European Type II and Type III spinal muscular atrophy patients. Neuromuscul Disord 2017;27(5):428-438.

8. NIH. Spinal Muscular Atrophy Factsheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Spinal-Muscular-Atrophy-Fact-Sheet