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Support and Resources for Spinal Muscular Atrophy

Nutrition and Dietetics Student | Shield HealthCare
08/22/17  1:50 PM PST
Spinal Muscular Atrophy

Support and Resources for Spinal Muscular Atrophy

August is Spinal Muscular Atrophy awareness month. Cure SMA has been advocating for patients and their families since 1984. With chapters across the nation, Cure SMA is pursuing legislative goals to help those affected by SMA, such as newborn screening.

What is Spinal Muscular Atrophy?

Spinal muscular atrophy (SMA) is a genetic neuromuscular disease affecting 1 in 10,000 live births.

Is there a cure?

There is currently no cure for SMA but you can manage symptoms and prevent complications with exercise and therapies, like physical therapy, occupational therapy, aquatic therapy, hippotherapy and more.

SMA Types and Characteristics:

Age of Onset Lifespan Features Common Complications
Type 1
Severe
0-6 months <2 years -Delayed motor skills
-Development hypotonia
-Muscle weakness
-Never sits unassisted
-Delayed growth
-Aspiration
-Feeding/swallowing dysfunction
-Fatigue
-Gastric dysmotility
Type 2
Intermediate
7-18 months >2 years -Never stands unassisted -Difficulty swallowing
-Muscle weakness
-Scoliosis
-Deformities
-Tremors
-Reduced limb movement
Type 3
Mild
>18 months Through adulthood -Can walk into adulthood
-Legs severely affected
-Frequent falls
-Scoliosis
-Muscle contractures
Type 4 Adult years
(usually after 35 years old)
Through adulthood -Can walk -Joint contractures
-Pneumonia
-Mild muscle weakness
-Scoliosis

How does SMA affect nutrition status?

Spinal muscular atrophy causes muscle weakness and atrophy throughout the body. This can lead to gastrointestinal difficulties, impaired digestion and aspiration of foods and liquids into the lungs.

Children and adults with SMA should be evaluated by a doctor and registered dietitian nutritionist. Adequate nutrition is vital for growth, motor function, breathing, illness prevention and overall quality of life.

Supplementation or tube feeding may be recommended if children and adults with SMA are not thriving. People with severe SMA may require specialized formulas with pre-digested nutrients to help with digestion and absorption.

 

Resources for Families of Children with Spinal Muscular Atrophy:

Support from Other Families Living with SMA:

Two Angels Living with Spinal Muscular Atrophy (blog)

Emmett’s Journey: His Life with Spinal Muscular Atrophy, Type 1 (blog)

Alyssa K. Silva: Dare to be Remarkable (blog)

 

Information and Resources:

MedlinePlus: Spinal Muscular Atrophy

MedlinePlus is the National Institutes of Health’s Web site for patients and their families and friends. 

CureSMA

Dedicated to the treatment and cure of spinal muscular atrophy (SMA), funding groundbreaking research and providing families the support they need.

SMA News Today

A news and information website about the disease.

Spinal Muscular Atrophy Foundation

Their mission is to accelerate the development of a treatment for SMA, the number one genetic killer of infants and toddlers.

 

Nutrition and SMA:

Nutrition Basics: Fostering Health and Growth for Spinal Muscular Atrophy

Spinal Muscular Atrophy: Summary for Nutritional Care. The Consensus Statement for Standard of Care in Spinal Muscular Atrophy.

 

More Articles on Children with Special Needs:

10 Things That Special Needs Parents Never Take For Granted

Connecting with My Special Needs Child: Precious Moments

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