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Dakota Center for Independent Living

SMA Awareness Month

Spinal Muscular Atrophy Awareness Month is a public health and awareness campaign focusing on the leading genetic cause of the death in babies younger than two years of age. It is for increasing awareness of spinal muscular atrophy including the availability of carrier screening. Spinal muscular atrophy affects all types of individuals from different ethnic predilections. In many cases, there is no prior history of the disease and the newly born baby with SMA appears normal and healthy. However, over time, the lack of muscular development becomes debilitating. On the other hand, intellectual development is normal. The muscle weakness usually leads to respiratory failure and general failure to thrive.

There are 3 types of SMA with different degrees of severity. The problem is that there are only limited treatment options available. About 1 in 40 individuals are not aware that they are carriers of the recessive gene for SMA so genetic screening for couples who want to get pregnant is the best option for preventing it.

The American College of Medical Genetics believes that all couples who are planning a pregnancy should be offered SMA carrier testing. This is in order to give families enough time to make informed decisions when it comes to reproduction. However, the American College of Obstetrics & Gynecology still has not made a formal statement in connection to SMA screening. Thus, there are varying practices among physicians with some offering it and others not offering it.

The purpose of Spinal Muscular Atrophy Awareness Month is to raise awareness of the deadly disease. This includes informing the public that SMA genetic screening is available and this is the best prevention. It is also for strengthening the fight against the deadly disease and supporting research for the purpose of finding a cure. It is also a time for supporting individuals suffering from the disease along with their families who suffer with them.

According to parents of children with SMA, the experience changes them forever. Their strength and courage is continuously tested out of love and devotion to their children. However, emotional and financial stress cannot be avoided. In fact, the cost of caring for a child with SMA is in between $260,000 to $3 million. This points to the importance of knowing your risks ahead of time by undergoing SMA screening before you get pregnant. For Spinal Muscular Atrophy Awareness Month, think about your family and friends who are planning to start a family and give them a reminder to asking their doctors about SMA screening. More importantly, to honor of those who have suffered because of SMA, help spread the word.