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August – The National Spinal Muscular Atrophy Awareness Month

Spinal Muscular AtrophySpinal muscular atrophy, the leading cause of genetic deaths in children is a group of inherited diseases that cause muscle damage and weakness, which get worse over time and eventually lead to death. According to the Families of SMA, one in every 6,000 babies is born with this condition. It’s not just children; it can strike anyone of any age, race or gender and 7.5 million Americans are carriers of SMA. This fatal disease destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing. Infants born with SMA have very little muscle tone. Weakness is often first felt in the shoulder and leg muscles. It gets worse over time and eventually becomes severe.

Since 1996, Families of Spinal Muscular Atrophy (FSMA) has been coordinating a National Awareness Month for this fatal disease. The community carries out several activities to promote general awareness regarding SMA. It also aims at developing new therapies to treat and ultimately cure the condition. Individuals can participate in this event by:

  • Posting on social media platforms on how they will be joining to help cure SMA
  • Sharing a personal interest story through a local newspaper, radio show, or online media outlet
  • Hosting a fundraiser, or participating in one in one’s locality
  • Reaching out to the local legislators and asking them to proclaim this month as SMA Awareness Month
  • Providing SMA information to one’s local hospital, OB-GYN and all medical professionals
  • Attending or coordinating one of the Awareness Nights for both major and minor league baseball.

Muscle weakness is the most obvious symptom of SMA that varies from person to person depending on the severity of the disease. SMA is often diagnosed by how the child appears physically. The medical history of the child is thoroughly reviewed and a physical exam performed to confirm the diagnosis. An electromyography (EMG) or a muscle biopsy may also be performed.

In recent years, significant progress has been made in the active management and comprehensive care of the disease. Orthopedic care and rehabilitation programs such as physical therapy, occupational therapy and speech therapy are ideal to help the child maintain the best posture for lung function and eating and to move during work or play. These treatment programs can also help manage and prevent muscle contractures, spinal deformity, and pain and bone fractures that can make the child’s disability worse.

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