Tuesday 12 June 2012
Support for newly-diagnosed families
For many families the diagnosis of Duchenne muscular dystrophy comes as a complete shock. Recently, the son of Andy Johnson, former professional rugby league player for Wigan Warriors, was diagnosed with Duchenne muscular dystrophy and this was highlighted in the press to emphasise the emotional impact this news has on families. The Muscular Dystrophy Campaign offers support and information during this difficult time and can assist in accessing a wide range of support that is available.
Our Information Service offers emotional support for families as well as opportunities to be put in contact with other families going through similar situations through our MD Links network and provides a forum for parents to discuss education issues via the Parents Education Network.
We produce over 100 free publications, which offer expert medical information, including our Introductory Guide for familes with a child newly diagnosed with Duchenne muscular dystrophy and our Introductory Guide for families with a child newly diagnosed with muscular dystrophy or an associated neuromuscular condition. Each booklet contains information and advice on how to deal with the diagnosis, considerations for caring for your child and planning for your child's future.
The Muscular Dystrophy Campaign has, for over 50 years, invested more than £50,000,000 into high-calibre research to find treatments and cures for muscle disease and there is now real hope for boys with Duchenne muscular dystrophy in the form of a gene therapy treatment known as exon skipping.
Dr Marita Pohlschmidt, Director of Research at the Muscular Dystrophy Campaign said: Parents of these boys can have real hope for the future.
Learn more about research developments
Contact the information service on 0800 652 6352 or info@muscular-dystrophy.org
