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.
Have you experienced muscle weakness? Less severe forms of SMA can emerge and be diagnosed in adulthood.3,4 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.2
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.5
For people living with SMA, health outcomes correlate with patient care and management of the disease. A range of care options and the careful management of SMA can result in improved quality of life, compared to being left untreated.5,6
Spinal muscular atrophy (SMA) is a genetic disease that affects the nervous system and worsens over time.6,7
Once thought to be primarily a childhood disease, SMA can be diagnosed in adolescents, young adults and even those beyond 21 years of age.7
Have you experienced muscle weakness? Less severe forms of SMA can emerge and be diagnosed in adulthood.3,4 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.2
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.5
For people living with SMA, the health outcomes correlate with patient care and management of the disease. A range of care options and the careful management of SMA can result in improved quality of life, compared to being left untreated.5,6
Spinal muscular atrophy (SMA) is a genetic disease that affects the nervous system and worsens over time.6,7
Once thought to be primarily a childhood disease, SMA can be diagnosed in adolescents, young adults and even those beyond 21 years of age.7
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.6
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.
1.Lin C-W, Kalb SJ, Yeh W-S. Delay in Diagnosis of Spinal Muscular Atrophy: A Systematic Literature Review. Pediatr Neurol 2015;53:293-300.
2.Wang CH, et al. Consensus statement for standard of care in spinal muscular atrophy. J Child Neurol 2007;22(8):1027-49.
3. Montes J. Spinal Muscular Atrophy in Adults. [online] [cited 2023 Sep 19]. Available from: URL:
https://www.neuropt.org/docs/degenerative-diseases-sig/spinalmuscular-atrophy-in-adults.pdf?sfvrsn=8d2aae96_2.
4. Juntas Morales R, Pageot N, Taieb G, Camu W. Adult-onset spinal muscular atrophy: an update. Rev Neurol (Paris) 2017;173(5):308-19.
5. 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.
6. 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.
7. NIH. Spinal Muscular Atrophy Factsheet. [online] [cited 2023 Sep 19]. Available from: URL: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Spinal-Muscular-Atrophy-Fact-Sheet.