NINDS Kearns-Sayre Syndrome Information Page: NINDS

Article title: NINDS Kearns-Sayre Syndrome Information Page: NINDS
Main condition: Kearns-Sayre syndrome
Conditions: Kearns-Sayre syndrome

What is Kearns-Sayre Syndrome?
Kearns-Sayre syndrome (KSS) is a rare neuromuscular disorder with onset usually before the age of 20. It is characterized by progressive external ophthalmoplegia (paralysis of the eye muscles) and mild skeletal muscle weakness. It may also be associated with other manifestations such as retinal pigmentation (abnormal accumulation of pigmented material on the membrane lining the eyes), cardiac conduction defects, short stature, hearing loss, increased cerebrospinal fluid protein, inability to coordinate voluntary movements (ataxia), impaired cognitive dysfunction, diabetes, and other endocrine disorders.

Is there any treatment?
Treatment for KSS is generally symptomatic and supportive. Cardiac abnormalities may be treated with various cardiac drugs or a pacemaker.

What is the prognosis?
The prognosis for individuals with KSS varies depending on the severity of symptoms.

What research is being done?
The NINDS supports research on neuromuscular disorders such as KSS. The goals of this research are to increase understanding of these disorders, and to find ways to prevent, treat, and, ultimately, cure them.

Organizations

Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson, AZ 85718-3208
mda@mdausa.org
http://www.mdausa.org/
Tel: 520-529-2000 800-572-1717
Fax: 520-529-5300

National Organization for Rare Disorders (NORD)
P.O. Box 8923
(100 Route 37)
New Fairfield, CT 06812-8923
orphan@rarediseases.org
http://www.rarediseases.org/
Tel: 203-746-6518 800-999-NORD (6673)
Fax: 203-746-6481

United Mitochondrial Disease Foundation
P.O. Box 1151
Monroeville, PA 15146-1151
umdf@nb.net
http://www.umdf.org/
Tel: 412-793-8077
Fax: 412-793-6477

This fact sheet is in the public domain. You may copy it.Provided by:
The National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892

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