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Ullrich congenital muscular dystrophy
Other Names for this Disease
- Late onset scleroatonic familial myopathy (subtype)
- Scleroatonic muscular dystrophy
- Ullrich disease
- Ullrich scleroatonic muscular dystrophy
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Physical therapy, including early mobilization, regular stretching and splinting, is the main focus of supportive care. Respiratory support and night-time ventilation often becomes necessary in the first or second decade of life. Prevention of chest infections may be achieved with the use of antibiotics. Feeding difficulties leading to failure to thrive may be managed by gastrostomy. Surgery may be needed for contractures and scoliosis. Some reports indicate that people with Ullrich congenital muscular dystrophy may may benefit from cyclosporin A. More studies into the benefits of this therapy are needed.
Last updated: 3/4/2014
- Lampe AK, Flanigan KM, Bushby KM, Hicks D. Collagen Type VI-Related Disorders. GeneReviews. August 9, 2012; http://www.ncbi.nlm.nih.gov/books/NBK1503/. Accessed 3/4/2014.
- Eymard B. Congenital muscular dystrophy, Ullrich type. Orphanet. http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=75840. Accessed 3/4/2014.
- 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.
Clinical Trials & Research for this Disease
- ClinicalTrials.gov lists trials that are studying or have studied Ullrich congenital muscular dystrophy. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.