FAQs about living with SMA
Each person has two copies of the SMN1 gene that causes spinal muscular atrophy (SMA) — one inherited from each biological parent. SMA will only develop if both copies are mutated. People with SMA are guaranteed to pass on one mutated copy of the gene to their biological children, who will only develop the disease if they also inherit a second mutated copy from their other parent.
Some health insurance plans may provide coverage for specialized equipment, while others won’t, depending on the company’s policies. It is suggested that spinal muscular atrophy patients or their caregivers talk to their healthcare team and insurance providers about accessing specialized equipment.
Muscle weakness that results from spinal muscular atrophy (SMA) can make operating a motor vehicle difficult, but many patients are able to drive. Vehicle modifications can make driving easier for people with SMA.
Spinal muscular atrophy (SMA) is a progressive disease, which means that the symptoms generally worsen over time. However, in recent years, a number of disease-modifying treatments have become widely available; these can slow or even stop the progression of SMA. The use of specialized equipment also can help to better manage SMA symptoms.
Historically, most people born with spinal muscular atrophy (SMA) have had a markedly shortened lifespan. However, new disease-modifying treatments can allow patients — especially infants — to live longer than has ever been possible before. Because these treatments were developed only recently, the long-term SMA life expectancy for someone being treated is currently impossible to know with certainty.