Patient and Parent Perspectives on the Use of Nusinersen for Spinal Muscular Atrophy

Patient and Parent Perspectives on the Use of Nusinersen for Spinal Muscular Atrophy

by | Jan 28, 2019 | Genetic Counselor Resource Page One, Genetic Counselor Resource Pages, Neurologists Resource Page One, Neurologists Resource Pages, Nursing Resource Page One, Nursing Resource Pages, Nutritionist Resource Page One, Nutritionist Resource Pages, Orthopedics Resource Page One, Orthopedics Resource Pages, Pediatricians Resource Page One, Pediatricians Resources, Physical Therapists Resource Page One, Physical Therapists Resource Pages, Pulmonologist Resource Page One, Pulmonologist Resource Pages, Radiology Resource Page One, Radiology Resources, Social Worker Resource Page One, Social Worker Resource Pages, Urologist Resource Page One, Urologist Resources

At the end of 2016, the U.S. Food and Drug Administration (FDA) approved nusinersen for the treatment of spinal muscular atrophy (SMA).1 Because of the high threshold for FDA approval, an abundance of data on nusinersen and its physiological effects on SMA patients...
Sleep Disorders in Spinal Muscular Atrophy

Sleep Disorders in Spinal Muscular Atrophy

by | Jan 7, 2019 | Nursing Resource Page Two, Nursing Resource Pages, Nutritionist Resource Page Two, Nutritionist Resource Pages, Orthopedics Resource Page Two, Orthopedics Resource Pages, Pediatricians Resource Page Two, Pediatricians Resources

Those with spinal muscular atrophy (SMA) often suffer from sleep disorders, but the specific reasons for sleep disturbances vary. For instance, some studies on SMA report sleep disturbances resulting from breathing disorders like sleep apneas, whereas others report...
Assistive Devices and Equipment in Spinal Muscular Atrophy: Feeding

Assistive Devices and Equipment in Spinal Muscular Atrophy: Feeding

by | Dec 20, 2018 | Nursing Resource Page Three, Nursing Resource Pages, Nutritionist Resource Page One, Nutritionist Resource Pages, Pediatricians Resource Page One, Pediatricians Resources

Feeding is often a challenge in people with spinal muscular atrophy (SMA), particularly in those with more severe forms, and feeding difficulties can lead to malnutrition and suboptimal body composition.1,2 Loss of ability to sit is associated with the need for...
Spinal Muscular Atrophy: Awareness and Attitudes

Spinal Muscular Atrophy: Awareness and Attitudes

by | Dec 20, 2018 | Neurologists Resource Pages, Nursing Resource Page One, Nursing Resource Pages, Nutritionist Resource Page One, Nutritionist Resource Pages, Orthopedics Resource Page One, Orthopedics Resource Pages, Pediatricians Resource Page One, Pediatricians Resources, Physical Therapists Resource Page One, Physical Therapists Resource Pages, Pulmonologist Resource Page One, Pulmonologist Resource Pages, Radiology Resource Page Three, Radiology Resources, Social Worker Resource Page One, Social Worker Resource Pages, Urologist Resource Page Two, Urologist Resources

There is a paucity of information on awareness of and attitudes towards spinal muscular atrophy (SMA) and medical approaches to the disease.1,2 However, research into what is known about SMA has revealed that the public is largely unfamiliar with SMA, and even...
Spinal Muscular Atrophy: Effects on Home, School, and Leisure

Spinal Muscular Atrophy: Effects on Home, School, and Leisure

by | Dec 19, 2018 | Nutritionist Resource Pages, Pediatricians Resource Page One, Pediatricians Resources, Social Worker Resource Page One, Social Worker Resource Pages

Those with spinal muscular atrophy (SMA) face psychological and social challenges that often hinder quality of life.1 Even those who are able to live in their homes and participate in school, employment, and leisure activities are burdened with challenges related to...