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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Ullrich congenital muscular dystrophy


Other Names for this Disease

  • Late onset scleroatonic familial myopathy (subtype)
  • Scleroatonic muscular dystrophy
  • UCMD
  • Ullrich disease
  • Ullrich scleroatonic muscular dystrophy
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

My brother has Ullrich congenital muscular dystrophy. Is there a cure for this disease?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

Is there a cure for Ullrich congenital muscular dystrophy?

At the moment there is no cure for Ullrich congenital muscular dystrophy. However, there are ways of helping to manage the symptoms and improve quality of life for individuals with this condition.[1]
Last updated: 3/4/2014

How might Ullrich muscular dystrophy be treated?

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.[2][3] 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.[3]
Last updated: 3/4/2014

What is the prognosis for people with Ullrich congenital muscular dystrophy?

Ullrich congenital muscular dystrophy is a progressive disorder. Most patients are unable to walk or walk for only a short period of time, usually before puberty. Children may be able to stand and walk with the aid of leg splints.[3]
Last updated: 3/4/2014

References
Other Names for this Disease
  • Late onset scleroatonic familial myopathy (subtype)
  • Scleroatonic muscular dystrophy
  • UCMD
  • Ullrich disease
  • Ullrich scleroatonic muscular dystrophy
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.