“When I got the diagnosis, I was 16, going on my 17, I took it pretty good because it was putting a name on what I had.”
- Samuel
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.
Share page
VOICES OF PEOPLE LIVING WITH SMA
Once thought to be primarily a childhood disease, spinal muscular atrophy (SMA) can be diagnosed in adolescents, young adults, and even those beyond 21 years of age.1
Share now
A CAREGIVER’S PERSPECTIVE:
“I wish I had pushed harder”
A caregiver of a young adult living with SMA and his family’s journey.
“If I would have known the disease, I would have done differently one thing: get back to the doctor, get back to the doctor like every five minutes! Because there was something wrong, for sure. … see a specialist, don’t wait, because the more you wait, the more regression they have. It can’t come back.”
by Michel
LIVING WITH SMA AS AN ADULT
As an adult living with Type II/IlI SMA, you might not perceive the gradual loss of function, and even mistake it for stabilization. However, you are progressively losing function, which without intervention will become worse, and more noticeable. Care outcomes for people living with SMA are better today than ever before.
Share now
Advances in preclinical and clinical trials are improving our understanding of novel therapeutic options in people living with SMA, bringing hope, and raising the bar for treatment expectations.2,3
Share now
Speak to your doctor today to discuss treatment options.
Share now
A PATIENT’S PERSPECTIVE:
“I’m normal. Just different.”
A young adult living with SMA, who was diagnosed as an adolescent, and his perspective on life with SMA.
“My advice for teenagers with SMA or that they think they have SMA is to speak about it. [...] I could not say to dad – hey dad can we go to the doctor, I think there’s something wrong.
Talk about it, because you live with it, it’s your body. If you are a kid and you question yourself - Am I crazy or I can’t do it. Look it up, Google, type in “I can’t lift my arm with a 10-pound weight” and a bunch of results are gonna pop up. Take those proofs, go to dad or mum and say let’s go to the doctor!”
by Samuel
‘LIFE WITH SMA’ VIRTUAL
EXPERIENCE
Every individual living with SMA should be able to
enjoy equal opportunities, whether at work, at home,
or in their social lives.
That's why Biogen has created 'Life With SMA' —
a virtual experience developed in close collaboration
with people living with SMA and various groups such
as the European Alliance of Neuromuscular Disorders
Associations (EAMDA).
The ‘Life With SMA’ virtual experience offers tips and advice to young adults and teenagers on how to successfully navigate daily tasks related to:
Independent living
Education
Employment
Share now
Deep dive into the experience through its simple navigation – manual or automatic – and download the key takeaways available after each chapter
A lot has changed in the quality of care offered to people living with SMA. Ongoing research is providing an ever-increasing understanding of the science behind SMA and care options.2-4
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.
2. Mercuri E, Finkel RS, Muntoni F, 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.
3. Finkel R, Mercuri E, Meyer OH, 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.
4. Juntas Morales R, Pageot N, Taieb G, Camu W. Adult-onset spinal muscular atrophy: An update. Rev Neurol (Paris). 2017;173(5):308-319.
