Spinal Muscular Atrophy Awareness: What is it?

Posted on August 10, 2018 by kerri
Spinal Muscular Atrophy (SMA) is a condition that you may not have heard of, but it is the number one genetic cause of death in infancy. [1] SMA can onset at any age, and is staged by the age and functional ability of a person at onset of the disease. [1] While only 1 in 11,000 babies are born with SMA, 1 in 50 Americans are genetic carriers of the disease, though do not have symptoms of spinal muscular atrophy. [1]
cream SMA awareness ribbon
What is Spinal Muscular Atrophy
SMA is a disease that affects motor nerve cells in the spinal cord. [1] While walking, eating, talking and eventually breathing can all be affected, a person’s ability to think and learn is not—SMA is a physical genetic disorder. SMA is staged with numbers correlated based on the age at diagnosis. The younger a person is at onset of SMA, the more severe the condition usually is. [1.1]
Emerging treatments for SMA
Until recently, there were no treatments available for SMA. In 2016, the first approved drug treatment specifically for SMA, treating all ages and stages of the disease, was released. [2] The drug is infused directly into the fluid inside the spinal column. Outside of this single drug treatment, which can be extremely expensive and hard to access, SMA treatment aims to decrease effects of the disease and promote independence and quality of life. [2]
Living with SMA
Children and adults with SMA do not have impairment in intellectual functioning, so they can and should attend school with their age-matched peers. Many with SMA go on to college or university, and may or may not need a personal care attendant to assist them with self-care.
With different stages of SMA, more medical interventions may be necessary. Support with breathing through use of a ventilator and tracheostomy tube, or non-invasive ventilation system (BiPAP) may be necessary in stage 1 or 2; those with stage 2 or 3 SMA may use non-invasive ventilation only when sleeping or sick. [3] These interventions will depend on the person.
Various changes may occur to the musculoskeletal system—some with SMA may be unable to sit unsupported, while others may be able to stand or walk. Various mobility aids are used depending on what a person with SMA needs—for example, a walker, crutches, wheelchair or medical stroller. [3.1] Physical and occupational therapy will help reach maximal independence. [3.1]
Feeding issues may occur because of muscular weakness, such as difficulty chewing and swallowing. Smaller meals, soft diets, and in some cases—such as SMA type 1—feeding tubes may be used to ensure optimal nutrition. [3.2]
Medical ID for Spinal Muscular Atrophy
As people with SMA may require a personal caregiver, medical ID jewelry may be overlooked since this person attends to their needs. However, especially for children, or those who may struggle with communication, spinal muscular atrophy medical ID jewelry can be important to ensure their safety in an emergency. Caregiver medical ID jewelry is also important to ensure the person with SMA is cared for if something happens to their caregiver. My Identity Doctor has many styles of stainless steel medical ID jewelry available for your safety, with custom engraving for your specific needs in SMD jewelry.

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