Welcome
Welcome to the Spinal Muscular Atrophy Association of Australia Inc.website. We are dedicated to providing support to those suffering from all types of SMA along with their families! You are not alone!
Spinal Muscular Atrophy (SMA) is a rare, inherited disease that results in the loss of nerves in the spinal cord and weakness of the muscles connected with those nerves. The muscles most frequently affected are those of the neck and trunk that control posture, those of the leg and arm that control movement, and those of the area of the ribs that help breathing.
People with SMA generally appear normal at birth; the symptoms develop as early as three months in the most severely affected, around one to two years of age in the moderately affected,and more rarely in the late childhood or adult years in mildly affected individuals.
There is no known treatment for SMA; historically, nearly half of babies born with the most severe form of the disease have died before aged two. All people with SMA have a higher than normal risk for progressive disability. The most severely affected are at risk for breathing complications and premature death. No two cases will follow the same course, everyone is different!
SMA IS THE NUMBER 1 GENETIC KILLER OF CHILDREN UNDER 2 YEARS OF AGE!
Yet very few people have ever heard of it, and 1 in 35 people carry the gene
Fortunately, there is much we can do in providing the required care along with the many possible treatments becoming available that mayhelp alleviate some of the symptoms to improve the quality of life but not to necessarily extend it!
Thank you for taking the time to read more about Spinal Muscular Atrophy. I know my story and the stories of other SMA type 1 families can often be sad and confronting at times, but we need you to know our reality and our journeys to highlight the severity of this disease and the number of babies whose lives are taken from SMA.
Click here to read more....
