Other Names for this Disease
- Chronic progressive external ophthalmoplegia with myopathy
- CPEO with myopathy
- CPEO with ragged red fibers
- Mitochondrial cytopathy
Your QuestionI know a young man in Brazil who has Kearn-Sayre syndrome. Could you provide me with information about this condition? Are there treatment centers that specialize in treating individuals with Kearns-Sayre syndrome?
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Additional symptoms may include mild skeletal muscle weakness, short stature, hearing loss, impaired cognitive function, and diabetes mellitus. Seizures are infrequent. Several endocrine disorders can be associated with Kearns-Sayre syndrome, including delayed sexual maturation, hypothyroidism, and growth hormone deficiency.
The Muscular Dystrophy Association (MDA) offers a nationwide network of hospital-affiliated clinics staffed by top neuromuscular disease specialists. These clinics serve people with a range of neuromuscular disorders, including Kearns-Sayre syndrome. These clinics also serve as sites for clinical trials of the latest experimental therapies and drugs. MDA also offers some 240 support groups for those with neuromuscular diseases and their families. To learn about accessing these services, contact the MDA.
Muscular Dystrophy Association (MDA) - USA
3300 E. Sunrise Drive
Tucson, AZ 85718
Web site: http://www.mdausa.org
You may also wish to utilize the services of the Mitochondria Research Society (MRS). This group is a nonprofit international organization of scientists and physicians. The purpose of MRS is to find a cure for mitochondrial diseases by promoting research on basic science of mitochondria, mitochondrial pathogenesis, prevention, diagnosis and treatment through out the world. You can locate physician experts through their web site.
Mitochondria Research Society
Physician List: http://www.mitoresearch.org/newfiles/MRSExpertList.doc
- DiMauro S, Hirano M. Mitochondrial DNA Deletion Syndromes. GeneReviews. May 3, 2011; http://www.ncbi.nlm.nih.gov/books/NBK1203/. Accessed 12/17/2014.
- NINDS Kearns-Sayre Syndrome Information Page. National Institute of Neurological Disorders and Stroke (NINDS). June 4, 2012; http://www.ninds.nih.gov/disorders/kearns_sayre/kearns_sayre.htm. Accessed 12/17/2014.
- Facts about Mitochondrial Myopathies. Muscular Dystrophy Association (MDA). December 2009; http://static.mda.org/publications/PDFs/FA-MITO.pdf. Accessed 12/17/2014.
- Kearns-Sayre syndrome. Genetics Home Reference (GHR). December 2011; http://ghr.nlm.nih.gov/condition/kearns-sayre-syndrome. Accessed 12/17/2014.