Living With SMA
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Living With SMA
View our ‘Living With SMA’ series to learn more about SMA (Spinal Muscular Atrophy) and download the full infographic series here:
What is SMA?
Here are some quick facts about spinal muscular atrophy (SMA).
How much does SMA cost?
Look into the various expenses related to the management of spinal muscular atrophy (SMA).
How SMA affects me physically
Here are five physical limitations that affect persons with SMA the most on a daily basis.
How SMA affects us mentally
The mental toll SMA can bring to persons with SMA and their caregivers.
SMA and quality of life
The barriers preventing persons with SMA from achieving their full potential.
Treatments that matter
The treatments persons with SMA and their caregiver consider most important.
Our worries and wants
Worries, concerns, hopes and wants of persons with SMA and their caregivers.
Needs and recommendations for doctors
Crucial roles that doctors play in the care for persons with SMA.
Needs and recommendations for policymakers
Key areas for policymakers to consider in supporting the SMA community.
SMA is an inherited genetic disease. It occurs when a child inherits two mutated copies of the survival motor neuron 1 (SMN1) gene, one from each parent (autosomal recessive inheritance).
Below are the various expenses related to the management of spinal muscular atrophy (SMA), which can greatly strain a family’s finances.
In this study, the foremost issue was the lack of independence and mobility. In particular, this was a critical milestone for patients with SMA type 3 as they transitioned from being independently mobile to becoming wheelchair-bound. On the other hand, wheelchairs are a part of life for those with SMA type 2, who are usually adept at utilising powered or electric wheelchairs. However, all face difficulty travelling independently or navigating their environment due to sub-optimal infrastructure and public amenities that are inaccessible to wheelchairs.
There is need for a support system at each stage of SMA as many parents have painfully shared the mental torment, anger, stress, depression and anxiety they go through at each stage of the disease. This includes dealing with the shock and grief that comes with the diagnosis and prognosis, the mental burdens of caring for their child and the grief when the child passes away.