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.
Is one of your teenager or adult patients reporting 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 is a disease that will keep on progressing without proper intervention.4 SMA impacts the lives of patients, gradually making them more and more reliant on others to do small things for them – bringing their lives to a standstill.
The needs of people with SMA have evolved. Along with it much has changed in the quality of care and care approaches offered to them. Research into the underlying mechanisms of SMA has transformed the understanding of the disease and led to updated standards of care in terms of support and care options.5-7
Many adults living with SMA lead fulfilling and productive lives. And now that supportive care is improving and the therapeutic landscape is changing, care expectations are even greater.8
For people living with SMA, stabilising the disease and maintaining motor function represents major progress.4 In fact, without intervention, it is inevitable that people living with Type II/III SMA will see progression of their disease over time.9
We asked some Neurologists specialised in SMA to share their opinion about different aspects of the disease and of their patients' lives.
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.
There are new possibilities for adults living with SMA.
Together in SMA was created in support of that unity, and with the goal of becoming a valued tool for members of the team. Here you’ll find clinical information and care strategies that some people use to help manage the disease.
Biogen is building on our legacy of rare disease research and development to explore potential treatment options. And even then, we’ll still be together in SMA.
1. Montes J. Spinal Muscular Atrophy in Adults. [online] [cited 2020 Nov 30]. Available from: URL: https://neuropt.org/docs/degenerative-diseases-sig/spinal-muscular-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. Kaufmann P, et al. Prospective cohort study of spinal muscular atrophy types 2 and 3. Neurol 2012;79:1889-1897.
5. 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.
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. Bharucha-Goebel D, Kaufmann P. Treatment Advances in Spinal Muscular Atrophy. Curr Neurol Neurosci Rep 2017;17(11):91.
8. Wan HWY, et al. “Getting ready for the adult world”: how adults with spinal muscular atrophy perceive and experience healthcare, transition and well-being. Orphanet J Rare Dis 2019;14:74.
9. 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.