The same study outlines caregiver and patient costs, spending an average of $12,800 on home modifications, $4,500 on assistive devices, $1,200 on travel and lodging, and $6,800 on other specialized medical services to help manage the disease.
How SMA Affects Quality of Life
Due to the nature of the disease, the quality of life of SMA patients is negatively affected. According to studies, people with type 1 have the lowest quality of life due to worse mobility scores and increased pain and discomfort from SMA due to factors such as the inability to walk, wash, or get dressed.
Anxiety and depression are also prevalent in people with type 1 SMA. This is because it can make people unable to do everyday activities that other people of the same age can do.
People with type 3 SMA have the highest quality of life scores, but still struggle with symptoms that reduce their quality of life compared to the average Canadian without SMA.
The future of Canadian SMA
The future of SMA in Canada is unclear due to the lack of clinical research surrounding the disease's impact on Canadians, but there are opportunities to expand research and better screening practices that may help improve the lives of people with the mutated SMN1 gene. There is hope for this. .
According to the Neuromuscular Disorders Network of Canada (NMD4C), only 72% of newborns are screened for SMA at birth through the NBS program, which is designed to screen newborns for genetic disorders at birth. All states are part of the NBS program, but not all use it for SMA screening.