Living a Better Life
Spinal Muscular Atrophy (SMA) is a genetic disorder that impacts the ability to control muscle movements due to the loss of nerve cells in the spinal cord. There are various types of SMA that range in severity and are classified based on the age of onset as well as the rate of progression of the disease.
Generally, the younger the person is when they develop the disease, the more severe their condition will be. While SMA can impact a person’s life severely, there are proven SMA treatment options that can help curb some of the symptoms and in some cases even allow individuals a higher quality of life.
SMA Treatment Options
It’s important to understand that there is currently no known cure for SMA. There is current research that is focused on understanding SMA and what we can do to prevent it or cure it once it has developed. Unfortunately, treatment options are the only resources available to patients. Current treatment options include:
In 2016 the FDA approved the use of Spinraza in patients who suffer with SMA. This is a groundbreaking SMA treatment option because it is the first medication that has been approved to specifically treat symptoms of SMA. It works to tackle the underlying issues of SMA so it can delay, prevent and even possibly reverse the symptoms. This is certainly a critical result from extensive SMA treatment research.
The dosage for the medication includes three injections that are spaced 14 days apart. After that, the injections are administered every four months. Currently, the side effects of this medication include higher risk for respiratory problems, constipation, bleeding and kidney problems.
Medical Assistive Devices
Assistive devices are proving to be one of the most effective SMA treatment options because it allows patients to live a much fuller life. Such assistive devices include wheelchairs, ventilators and computer alterations.
Because SMA can bring along severe respiratory problems, ventilators are especially important. Children who do not have a strong respiratory system can certainly benefit from machines that can help them breathe.
SMA Treatment Research
SMA experimental treatments are being heavily researched and tested. Currently efforts are focused on gene replacement, stem-cell replacement of motor neurons, and other therapies. Only time and further testing will let medical professionals know just how effective these treatments are on SMA and increasing longevity of life, especially in young children and infants.
For many patients, managing SMA becomes a lifelong focus. There are multiple ways in which MSA can be managed that can bring about a higher quality of life for individuals. Depending on severity, there are several options that could come into play.
To maintain muscle strength as long as possible, some individuals may participate in physical therapy activities. Activities may focus on strength and balance despite the fact that the disease is progressive. Certain activities have proven to prolong muscle strength and help individuals maintain balance for longer periods of time.
Diet and Nutrition
As researchers learn more about SMA, the more they realize that proper nutrition can also help in curbing some of the issues associated with SMA. As individuals lose their ability to swallow, certain foods may be better for their digestive tract.
Speaking with a nutritionist and learning more about options can help individuals get a grasp on the condition and things they can do to improve their quality of life and continue to live more independently for a longer period of time.
While there is no way to prevent SMA, nor a sure way to know if your child will have SMA, individuals who are carriers of the SMA genes are encouraged to discuss the potential outcomes with a genetic counseling professional. To put it in perspective, if both parents are carriers of SMA, there is a one in four chance their child will have SMA.
Learning whether or not you are an SMA carrier can help you make decisions about family planning and prepare for the potential outcomes if you child has SMA at any point in their lives.
SMA can take a toll on the patient as well as their families. Talk therapy can help individuals process the progressive disease and understand ways they can be there emotionally for their loved ones. If you are struggling with the emotional implications of SMA, ask your doctor for resources in your area.
SMA is a serious disease, but there are treatment options available that vary depending on the type of SMA a patient has been diagnosed with. The severity and the age at which the individual develops SMA will strongly influence the best treatment plan for you.
Individuals are encouraged to discuss all their options with their medical provider in order to establish a treatment plan that works best for you.