There are established behaviour and learning risks in Duchenne. Published studies have shown difficulties in the following areas:
If you have Duchenne you have a higher risk of having the following diagnoses as well (but not everyone with Duchenne has them!):
See the Standards of Care Treat-NMD guide (page 39) for more information.
Please also see the PPUK Learning and Behaviour Toolkit .
Nobody is looking for extra labels but it is important that you let school and other people working with your child know about these possible risks as it may help to make them understand his or her behaviour.
Decipha CIC is subsidised by Action Duchenne to work with young people with Duchenne, their families and schools. Decipha’s work in Duchenne is based on research in Duchenne and best practice interventions for young people with a variety of Special Educational Needs and Disabilities from 0 – 25 years. We work with young people, families and schools/colleges to assess, support and intervene with any educational needs.
Decipha has also been funded by the Council for Disabled to run a Leadership Programme for young adults aged 19 – 25 years in East London who have a life limiting/threatening or complex condition. Have a look at our blogs to find out about the programme: www.decipha.org/blog
You can contact the Decipha team here:
Some of the published studies about learning and behaviour in Duchenne:
Cotton, S., Voudouris, NJ. & Greenwood, KM. (2001) Intelligence and Duchenne muscular dystrophy: full-scale, verbal, and performance intelligence quotients. Developmental Medicine and Child Neurology, 43(7), 497-501
Hendriksen, J.G. & Vles, J.S. (2006) Are males with Duchenne muscular dystrophy at risk for reading disabilities? Pediatric Neurology, 34: 296–300
Hendriksen, J.G. & Vles, JS. (2007) Neuropsychiatric disorders in males with Duchenne muscular dystrophy: frequency rate of attention-deficit hyperactivity disorder (ADHD), autism spectrum disorder, and obsessive-compulsive disorder. Journal of Child Neurology, 23: 477–81
Hinton, V.J., De Vivo, D.C., Fee, R., Goldstein, E. & Stern, Y. (2004) Investigation of Poor Academic Achievement in Children with Duchenne Muscular Dystrophy. Learning Disabilities Research and Practice, 19 (3), 146-154
Hinton, VJ., De Vivo, DC., Nereo, NE., Goldstein, E. & Stern, Y. (2000) Poor verbal working memory across intellectual level in boys with Duchenne dystrophy. Neurology, 54:2127–2132
Pane, M., Lombardo, M.E., Alfieri, P., D’Amico, A., Bianco, F., Vasco. G., Piccini, G., Mallardi, M., Romeo, D.M., Ricotti, V., Ferlini, A., Gualandi, F., Vicari, S., Bertini, E., Berardinelli, A., Mercuri, E. (2012) Attention Deficit Hyperactivity Disorder and Cognitive Function in Duchenne Muscular Dystrophy: Phenotype-Genotype Correlation Journal of Pediatrics Oct;161(4):705-9