Ullrich congenital muscular dystrophy

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.

Last updated on 05-01-20

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. 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 on 05-01-20

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.

Last updated on 05-01-20

Name: Cure CMD - Congenital Muscular Dystrophy 19401 S. Vermont Ave., Suite J100
Torrance, CA, 90502, United States
Phone: 323-250-2399 or 424-265-0874 Email: info@curecmd.org Url: https://www.curecmd.org/
Name: Muscular Dystrophy Association MDA 222 S Riverside Plaza Suite 1500
Chicago, IL, 60606, United States
Toll Free: 1-833-275-6321 (Helpline) Email: resourcecenter@mdausa.org Url: https://www.mda.org
Name: Muscular Dystrophy UK 61A Great Suffolk Street
London, SE1 0BU, United Kingdom
Phone: (+44) 0 020 7803 4800 Toll Free: 0800 652 6352 (Helpline) Email: info@musculardystrophyuk.org Url: https://www.musculardystrophyuk.org/
Ullrich congenital muscular dystrophy Muscular Dystrophy Campaign. April 2008; Reference Link Lampe AK, Flanigan KM, Bushby KM, Hicks D. Collagen Type VI-Related Disorders GeneReviews. August 9, 2012; Reference Link Eymard B. Congenital muscular dystrophy, Ullrich type Orphanet. Reference Link Ullrich congenital muscular dystrophy Genetics Home Reference (GHR). October 2010; Reference Link

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