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Myotonic Dystrophy/Congenital Myotonic Dystrophy
Is there support?
35a Carlton Hill
Carlton
Nottingham
NG4 1BG
Tel/Fax: 0115 987 0080 (for Fax call first)
e-mail: mdsg@tesco.net
Web: http://www.mdsguk.org
The Group is a National Registered Charity No. 1073211, established in 1989. It offers support by telephone and letter and contact with other families where possible. It has a network of Regional Co-ordinators and provides an 'ALERT' card to be carried by affected persons for use in emergency situations giving vital details about abnormal heart rhythm, anaesthetics, speech difficulties, extreme tiredness and muscle stiffness and weakness in people with myotonic dystrophy. Also available is a 'CARE' card; a personal record for health checks useful for individuals and professionals caring for them. It publishes a quarterly newsletter and has a wide range of information available, details on request. The Group has around 1,500 families in membership.
Group details last updated April 2008.
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