Ullrich congenital muscular dystrophy
Other Names for this Disease
- Ullrich disease
- Ullrich scleroatonic muscular dystrophy
- Late onset scleroatonic familial myopathy (subtype)
- 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.
- 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.
- 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.