Living with SMA

VOICES FROM 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 18 years of age.¹

A CAREGIVER’S PERSPECTIVE:

“I wish I had pushed harder”

A caregiver of a young adult living with SMA and his family’s journey.

Signs and Symptoms

“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…”

by Michel

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.

How to get diagnosed

“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

LIVING WITH SMA AS AN ADULT

Without intervention, people living with Type II/III SMA will see progression of their disease over time, so it’s important to help stabilise and help maintain motor function as early as possible.²

For people living with SMA, care practices have evolved with time and are seeking to improve.³

Talk to your doctor today to discuss options for managing SMA.

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.^3-5

SMA Care for Adults

The information provided on TISMA is not intended to replace the advice of your healthcare professional. Speak to your healthcare professional for further information on SMA and care options

Disease Stabilisation

SMA Community

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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

Better Health Channel. Spinal Muscular Atrophy. Available at: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/spinal-muscular-atrophy-sma#types-of-spinal-muscular-atrophy (Accessed June 2022).
Kaufmann P et al. Prospective cohort study of spinal muscular atrophy types 2 and 3. Neurology 2012;79:1889-1897.
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.
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.
Juntas Morales R et al. Adult-onset spinal muscular atrophy: An update. Rev Neurol (Paris) 2017;173(5):308-319.