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Genetic and Rare Diseases Information Center (GARD)

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Alpers syndrome


Other Names for this Disease

  • Alpers diffuse degeneration of cerebral gray matter with hepatic cirrhosis
  • Alpers disease
  • Alpers progressive infantile poliodystrophy
  • Alpers-Huttenlocher syndrome
  • Diffuse cerebral degeneration in infancy
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

My nephew has just been diagnosed with Alpers syndrome. The family is devastated. Is there a treatment or cure?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is Alpers syndrome?

Alpers syndrome is a progressive neurologic disorder that begins during childhood and is complicated in many instances by serious liver disease. Symptoms include increased muscle tone with exaggerated reflexes (spasticity), seizures, and loss of cognitive ability (dementia). [1]  Most often Alpers syndrome is caused by mutations in the POLG gene. [2]
Last updated: 1/24/2011

How might Alpers syndrome be treated?

Treatment for Alpers syndrome is limited to managment of symptoms and supportive care. There is currently no cure. [2] [3]
A multi-disciplinary medical team of a gastroenterologist, neurologist, occupational, physical and/or speech therapist can assist with management of symptoms to maintain function as long as possible, insure comfort and promote the best possible quality-of-life. [2]
Last updated: 5/26/2011

Are there any support organizations for families and individuals with Alpers syndrome?

The following organizations provide support for individuals caring for patients with conditions such as Alpers syndrome.  

  • MUMS National Parent to Parent Network
    150 Custer Court
    Green Bay, WI 54301
    Toll-free: 877-336-5333
    Telephone: 920-336-5333
    Fax: 920-339-0995
    E-mail:  mums@netnet.net
    Web site:  http://www.netnet.net/mums/
  • Epilepsy Foundation
    8301 Professional Place
    East Landover, MD 20785-2238
    Toll-free: 800-EFA-1000 (800-332-1000)
    Telephone: 301-459-3700
    Fax: 301-577-4941
    E-mail: info@efa.org    
    Web site: http://www.epilepsyfoundation.org/  
  • United Mitochondrial Disease Foundation
    8085 Saltsburg Road, Suite 201
    Pittsburg PA 15239
    Toll-free: 1-888-317-UMDF
    Telephone: 412-793-8077
    Fax: 412-793-6477
    E-mail: info@umdf.org
    Web site: http://www.umdf.org

Last updated: 5/26/2011

References
Other Names for this Disease
  • Alpers diffuse degeneration of cerebral gray matter with hepatic cirrhosis
  • Alpers disease
  • Alpers progressive infantile poliodystrophy
  • Alpers-Huttenlocher syndrome
  • Diffuse cerebral degeneration in infancy
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.