Home

Les bénévoles du groupe de soutien pour les patients atteints de dystrophie myotonique (‘The Myotonic Dystrophy Support Group’) travaillent à la reconnaissance nationale et internationale de la dystrophie myotonique. Le groups de soutien de dystrophie myotonique donne des informations et une aide aux personnes, aux familles et aux professionnels qui le souhaitent. Les familles et les professionnels de la santé nous disent qu’elles apprécient le travail que nous effectuons depuis 1985. Si cela vous intéresse de commencer un groupe semblable pour des familles dans votre propre pays, nous sommes prêts à vous écouter, à vous soutenir et à vous communiquer des informations. Nous voudrions échanger avec vous, discuter idées et projets et vous encourager dans vos efforts. Contactez-nous.

Pour toute information, merci de contacter Margaret A. Bowler à l’adresse suivante :

Mrs Margaret A Bowler SRN SCM , National Coordinator MDSG , 35A Carlton Hill , Carlton , Nottingham , NG4 1BG , England

E-mail : mdsg@tesco.net Téléphone (HELPLINE) : +44 (0)115 987 0080 Fax : +44 (0)115 987 6462

The Myotonic Dystrophy Foundation has been formed in America, their goal is to support those with Myotonic Dystrophy, to support research to find a cure or acceptable treatment for the disease, and to educate the public about Myotonic Dystrophy (i.e. educate, fundraise and advocate).

Canadian Group

The first regional support group for patients with Myotonic Dystrophy was recently established in Canada as a not for profit group to support affected families in the Greater Toronto and surrounding areas of Southern Ontario. Myotonic Dystrophy Toronto's mandate is patient education, development of a social support network and patient advocacy. It is hoped that the establishment of this group will help Canadian patients in other communities to facilitate similar goals. It will include patients with DM1, DM2, suspected DM3 and families of congenitally affected children.

For further questions about this group, to join our email list or to RSVP for the next meeting, please call the message centre at (416) 765-2001 or email myotonicdystrophy2@yahoo.com . http://health.groups.yahoo.com/group/MyotonicDystrophyToronto

This is an internet based group exclusively for patients diagnosed with Myotonic Dystrophy type 2 (DM2, PROMM, Ricker's). Members are from the US, Canada, Europe & Australia. The membership is very active and interested in learning as much as possible about their condition. This online forum includes a large resource base on DM2, including full text research & links to internet sites that reflect updated information on this disease. They maintain an archived message board and voice chat capabilities can be used via Yahoo Messenger or Skypes to speak live. Their advocacy is aimed at raising the profile of the myotonic dystrophies, increasing the availability of accurate updated information on this disease, supporting research efforts and encouraging members to become more informed about issues impacting their health.

They also have a team of well informed patient members willing to mentor those needing help finding appropriate resources. For further information, contact MyotonicDystrophy2@yahoo.com.

**DM2 is an often underdiagnosed form of Muscular Dystrophy, suspected by top researchers to have a similar prevalence to DM1. It is an autosomal dominant inherited multisystemic disorder caused by a defective gene on chromosome 3q21. The clinical features are heterogeneous & may include SOME OR MANY of the following: progressive muscle weakness & pain, stiffness, myotonia, fatigue, daytime sleepiness, cataracts, cardiac abnormalities, insulin resistance (type 2 diabetes) & mild cognitive disorder. This disease is clinically similar to Myotonic Dystrophy (DM1 or Steiner's), but there are many known clinical differences between DM1 & DM2.

This internet based group is intended for those patients with clinical symptoms of myotonic dystrophy who have received negative gene test results for both DM1 and DM2.

Some researchers are actively attempting to identify the causative gene mutation for what they believe to be the third form (DM3) and possibly even subsequent forms (DMX) of myotonic dystrophy. This disorder(s) is suspected to have symptoms somewhat common to the other myotonic dystrophies (DM1 and DM2), which are autosomal dominant inherited multisystemic disorders caused by defective genes. The clinical features are heterogeneous & may include the following: progressive muscle weakness & pain, myotonia, fatigue, cataracts, cardiac abnormalities, and cognitive symptoms. This forum is to encourage contact with other patients who also remain in limbo regarding their diagnosis.