What is Spinal Muscular Atrophy Awareness Month?
Spinal Muscular Atrophy Awareness Month is like a big embrace around everyone in the world who has the genetic disease or cares for someone who has it.
It’s a season of unity and camaraderie. It’s a time to celebrate the victories that science has achieved in combating a diagnosis that once almost always came with a terminal prognosis. It’s a time to honor the families who have completely reconfigured their routines to keep Spinal Muscular Atrophy, or SMA, confined to its smallest possible space.
August is Spinal Muscular Atrophy Month. If you know someone with the disease, take a moment to show them, and their caregivers, some extra love and attention.
SMA affects between one in 6,000 to one in 10,000 people in the United States, according to the SMA Foundation. Even more people — about one in 40 to one in 50 people — carry the gene for the disease without symptoms.
If two people have the gene, their children have a one-in-four chance of having the disease, according to the foundation.
SMA has four types, with each type indicating the severity and onset of symptoms. The disease, rooted in missing or mutated genes, progressively destroys motor neurons, hobbling the body’s ability to breathe, swallow, walk, move and speak, among other motor functions, according to the National Institutes of Neurological Disorders and Stroke.
The NINDS describes four types of SMA:
- SMA type I is the most devastating, and children diagnosed seldom make it to age 2.
- SMA type II usually presents between 6 and 18 months. With attentive care, people with this type can reach adolescence and young adulthood. While more hopeful than type I, type II still is a heart-wrenching diagnosis.
- SMA type III usually presents after 18 months when the child can already walk. People with this type are prone to respiratory infections, but can live into old age.
- SMA type IV symptoms usually arrive after 21 years and include mild to moderate muscle weakness and other symptoms.
While SMA is neurological in nature, it has no direct effect on intellectual development.
There is no cure for it, though scientists are getting much better at treating symptoms. New drug therapies are currently in progress, and could hit the market in the next few years, according to the NINDS.
Most effective for the youngest of patients, one drug on the market today produces the protein that the missing gene should have been responsible for. Two other drugs, a gene therapy on the market as Zolgensma and an oral drug called Evrysdi, both received FDA approval for use in children just within the last three years.
However, patients most often receive physical therapy and occupational therapy. Some may need help breathing with respirators, and may need to use feeding tubes if they struggle to swallow food. People with SMA often use other assistive devices like wheelchairs, braces and vocalizers.
The national advocacy organization for people with SMA pulled out all the stops for this year’s SMA Awareness Month.
Cure SMA dropped a ton of resources on its website, including social media profile picture frames, links to virtual events and daily activities you can do to show your support for this incredible community.
Check out Cure SMA’s Community Spotlight page for inspiring stories from people with SMA.
At Pride, we know that people with SMA count on the full run of adaptive mobility devices to achieve the highest quality of life possible.
It’s more than customer appreciation. A power wheelchair might just be steel tubing, electronics and wheels, but those components become the key to mobility reimagined when someone with SMA uses it to get to work every day or organize a candlelight vigil during SMA Awareness Month.
We understand that a mobility device will never replace the love and attention from a devoted caregiver. We know it’s not a stand-in for quality medical care and therapy, or a vibrant support community. It’s merely the tool that connects all those things. And for that, we’re honored to play our small part.