Limb-girdle muscular dystrophy
Other Names for this Disease
- Limb girdle muscular dystrophy
- Epidermolysa bullosa simplex with muscular dystrophy
- Limb-girdle muscular dystrophy type 1A
- Limb-girdle muscular dystrophy type 1B
- Limb-girdle muscular dystrophy type 1C
- Limb-girdle muscular dystrophy type 1D
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Unfortunately, no definitive treatments or effective medications for the limb-girdle muscular dystrophies (LGMDs) currently exist. Management depends on each individual and the specific type of LGMD that the individual has. However, a general approach to managing LGMD has been proposed, based on the typical progression and complications of affected individuals. This approach may include: weight control to avoid obesity; physical therapy and stretching exercises to promote mobility and prevent contractures (fixed tightening of the muscles); use of mechanical aids such as canes, walkers, orthotics, and wheelchairs as needed to help ambulation and mobility; monitoring and surgical intervention as needed for orthopedic complications such as foot deformity and scoliosis; monitoring respiratory function and use of respiratory aids when needed; monitoring for evidence of cardiomyopathy in the types of LGMD with known occurrence of cardiac involvement; and 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 disorders.
Last updated: 6/20/2011
- Erynn Gordon, Elena Pegoraro, Eric P Hoffman. Limb-Girdle Muscular Dystrophy Overview. GeneReviews. July 23, 2009; http://www.ncbi.nlm.nih.gov/books/NBK1408/#lgmd-overview.Management. Accessed 6/17/2011.
- 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.
- Project OrphanAnesthesia is a project whose aim is to create peer-reviewed, readily accessible guidelines for patients with rare diseases and for the anesthesiologists caring for them. The project is a collaborative effort of the German Society of Anesthesiology and Intensive Care, Orphanet, the European Society of Pediatric Anesthesia, anesthetists and rare disease experts with the aim to contribute to patient safety.
- ClinicalTrials.gov lists trials that are studying or have studied Limb-girdle muscular dystrophy. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- Orphanet lists European clinical trials, research studies, and patient registries enrolling people with this condition.