Other Names for this Disease
- Miyoshi distal myopathy
- Muscular dystrophy, distal, late onset, autosomal recessive
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There is currently no cure or definitive treatment for Miyoshi myopathy. Management should be tailored to each individual, depending on his/her specific signs and symptoms. A general approach to appropriate management can prolong survival and improve quality of life. This approach may include:
- Physical therapy and stretching exercises to promote mobility and prevent contractures
- Use of mechanical aids such as canes, walkers, orthotics, and wheelchairs as needed to help ambulation and mobility
- Surgical intervention as needed for orthopedic complications such as foot deformity and scoliosis
- Use of respiratory aids when indicated
- Social and emotional support and stimulation to maximize a sense of social involvement and productivity and to reduce the sense of social isolation common in these disorder
Last updated: 4/5/2011
- Masashi Aoki. Dysferlinopathy. GeneReviews. April 22, 2010; http://www.ncbi.nlm.nih.gov/books/NBK1303/. Accessed 4/4/2011.
- Finding Treatment Information - A video developed by GARD Information Specialists that explains how you can find information about treatment for a rare disease.
- GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. Click on the link to view the article on this topic.
- The Centers for Mendelian Genomics program is working to discover the causes of rare genetic disorders. For more information about applying to the research study, please visit their website.
- ClinicalTrials.gov lists trials that are studying or have studied Miyoshi myopathy. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- The Jain Foundation provides information on clinical trials and research studies for dysferlinopathy.