Kugelberg Welander Spinal Muscular Atrophy Follow-up

  • Author: Joyce L Oleszek, MD; Chief Editor: Denise I Campagnolo, MD, MS   more...
 
Updated: Nov 23, 2011
 

Further Outpatient Care

  • Patients with spinal muscular atrophy (SMA) should have frequent follow-up care for symptomatic control of their disease. Respiratory function, nutritional state, orthopedic status, and equipment needs should be assessed at each visit. Pain control, preventative medicine, surgical intervention, and physical therapy are all essential parts of the patient's long-term care. The multidisciplinary approach, which includes family members, social workers, therapists, and physicians, is important to assist the patient in maintaining a high quality of life.
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Complications

  • Scoliosis
  • Plantar flexion contractures
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Prognosis

  • Patients with spinal muscular atrophy experience a progressive loss of motor function that usually affects the legs before it does the arms, and the proximal muscles before the distal ones.
  • Patients who have never climbed stairs without a rail lose walking ability by their midteens. Patients who develop normal walking skills prior to the onset of muscle weakness can maintain this ability until the third or fourth decade.
  • Life expectancy for individuals with SMA type III has been shown to be similar to that of the general population.[5]
  • See Mortality/Morbidity.
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Contributor Information and Disclosures
Author

Joyce L Oleszek, MD  Assistant Professor, Department of Physical Medicine and Rehabilitation, University of Colorado at Denver Health Sciences Center, The Children's Hospital of Denver

Joyce L Oleszek, MD is a member of the following medical societies: American Academy of Physical Medicine and Rehabilitation

Disclosure: Nothing to disclose.

Coauthor(s)

Stephanie E Vallee, MS  Certified Genetic Counselor, Dartmouth-Hitchcock Medical Center, Children's Hospital at Dartmouth

Disclosure: Nothing to disclose.

Michael Dichiaro, MD  Pediatric Rehabilitation Medicine Fellow, Cincinnati Children's Hospital Medical Center

Michael Dichiaro, MD is a member of the following medical societies: American Academy of Cerebral Palsy and Developmental Medicine, American Academy of Physical Medicine and Rehabilitation, and Association of Academic Physiatrists

Disclosure: Nothing to disclose.

Mary Louise Caire, MD  Consulting Staff, Department of Physical Medicine and Rehabilitation, Wise Regional Medical Center

Mary Louise Caire, MD is a member of the following medical societies: American Academy of Physical Medicine and Rehabilitation, American Medical Association, and Texas Medical Association

Disclosure: Nothing to disclose.

Stephen Kishner, MD, MHA  Professor of Clinical Medicine, Physical Medicine and Rehabilitation Residency Program Director, Louisiana State University School of Medicine in New Orleans

Stephen Kishner, MD, MHA is a member of the following medical societies: American Academy of Physical Medicine and Rehabilitation and American Association of Neuromuscular and Electrodiagnostic Medicine

Disclosure: Nothing to disclose.

Specialty Editor Board

Teresa L Massagli, MD  Professor of Rehabilitation Medicine and Pediatrics, University of Washington School of Medicine

Teresa L Massagli, MD is a member of the following medical societies: American Academy of Pediatrics, American Academy of Physical Medicine and Rehabilitation, and Association of Academic Physiatrists

Disclosure: Nothing to disclose.

Francisco Talavera, PharmD, PhD  Adjunct Assistant Professor, University of Nebraska Medical Center College of Pharmacy; Editor-in-Chief, Medscape Drug Reference

Disclosure: Medscape Salary Employment

Kat Kolaski, MD  Assistant Professor, Departments of Orthopedic Surgery and Pediatrics, Wake Forest University School of Medicine

Kat Kolaski, MD is a member of the following medical societies: American Academy for Cerebral Palsy and Developmental Medicine and American Academy of Physical Medicine and Rehabilitation

Disclosure: Nothing to disclose.

Kelly L Allen, MD  Medical Director, Medevals

Disclosure: Nothing to disclose.

Chief Editor

Denise I Campagnolo, MD, MS  Director of Multiple Sclerosis Clinical Research and Staff Physiatrist, Barrow Neurology Clinics, St Joseph's Hospital and Medical Center; Investigator for Barrow Neurology Clinics; Director, NARCOMS Project for Consortium of MS Centers

Denise I Campagnolo, MD, MS is a member of the following medical societies: Alpha Omega Alpha, American Association of Neuromuscular and Electrodiagnostic Medicine, American Paraplegia Society, Association of Academic Physiatrists, and Consortium of Multiple Sclerosis Centers

Disclosure: Teva Neuroscience Honoraria Speaking and teaching; Serono-Pfizer Honoraria Speaking and teaching; Genzyme Corporation Grant/research funds investigator; Biogen Idec Grant/research funds investigator; Genentech, Inc Grant/research funds investigator; Eli Lilly & Company Grant/research funds investigator; Novartis investigator; MSDx LLC Grant/research funds investigator; BioMS Technology Corp Grant/research funds investigator; Avanir Pharmaceuticals Grant/research funds investigator

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