Services

Alert Card - We produce a card that can be carried to inform medics of the special requirements of someone with Myotonic Dystrophy in case of emergency. Prior to having surgery the anaesthetist and surgeon should always be informed of the condition and the alert card is an ideal way of providing the necessary information. Anyone with Myotonic Dystrophy is urged to carry one as a precaution and they are available free on request.

Annual Conference - Each year the group hosts a conference inviting specialist speakers. Workshops covering a wide range of related topics are also provided.  For more information please look at the Conference page.

Awareness Programme - We run a programme to raise awareness of the disease amongst the general public and the medical profession. This involves television, radio and newspaper reports, attending professional conferences and distributing information. By promoting understanding and awareness we strive to improve care provision and day to day self management.

Care Card - Also available free on request is a care card that can be used to carefully record dates and details of medical appointments which can be carried so that the correct specialists can be contacted if necessary. The card also details how an affected individuals health may be affected by Myotonic Dystrophy and is very useful in case of emergency. Care card  available for download, print off a copy of the from the Scottish Muscle Network.

Contact Families - We can put you in touch with other affected families and individuals in your area. They will understand what you are experiencing and be able to offer advice. We have a national contact family network and encourage international links.

Leaflets - The Support Group produce information leaflets which cover a variety of topics - Anaesthesia, Bowel problems, New Families, etc.  These leaflets can be ordered by downloading and completing this Leaflet form. or click on the following links to download the leaflets.

100 Hints & Tips    Bowel Problems     Facts        MDSG Information        

   Excessive Daytime Sleeping     Relatives Information      

International Dystrophia Myotonica Consortium (IDMC) - Every two years, scientists and clinicians from around the world meet up to discuss the latest research findings and possible therapies for Myotonic Dystrophy. 

The conference in 2009 will be held in Wurzeburg, Germany.

Last years conference was held in Milan, Italy 12th - 15th September 2007. Please follow this link to the IDMC-6 website.  

The conference in 2005 was held in Quebec, Canada - October 19th - 22nd. IDMC-5 Conference Report .  

***MDSG Branded items for sale

Diaries (with Notebook)                                £3.50

Blue ink biros (in a variety of barrel colours)       50p

Good quality Biros                                        £3.00

Gilet                                                          £18.00

Sweatshirts                                               £12.00

Polo Shirts                                                  £8.00

Please contact the office on 0115 9875869 for availability and details of Postage and packing costs

Newsletter - We produce a regular newsletter which is sent to everybody on our mailing list. Currently over 1200 copies are distributed detailing events, information and research developments.  To join our mailing list Contact us.

Regional Meetings - In some areas members arrange regular get-togethers enabling families to meet in an informal setting.  Please look at the News page for more information.

Telephone Listening - We provide emotional support and advice through our helpline 0115 9870080.

If you would like to support our work or to become a member of the group click the Support us button at the top of this page.

Page last updated 20/01/2009