Leaflets

Group activities and membership

The myotonic dystrophy support group offers the hand of friendship,endeavouring to reduce the sense of isolation often experienced both before and after diagnosis.We are here when you want to share concerns or need to talk with someone who understands.

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Facts for patients, family members and professionals

Myotonic Dystrophy is the most common muscular dystrophy of adult life and also the most variable. Some patients have disabling neuromuscular symptoms, especially weakness and to a lesser extent stiffness (myotonia); others have minimal muscle symptoms. Onset varies from birth to old age. Download Leaflet

Relatives information

You have been given this information sheet because a relative of yours has been diagnosed as having Myotonic Dystrophy. This is an inherited condition and because of your family relationship it is possible that you may also have inherited the faulty gene that causes it. If your affected relation is one of your parents, a brother or sister, or one of your children, then there is a 50% possibility that you might have the abnormal gene. Download Leaflet

Why do we get new families with myotonic dystrophy?

Myotonic Dystrophy is an inherited condition being transmitted from one generation to the next. Each individual has two copies of each gene, one inherited from each parent, and passes either one of these to their own children. Only one copy of the defective gene is required to develop myotonic dystrophy. Download Leaflet

Anaesthesia and sedation.

There are several potential problems that can occur if a patient with DM needs surgery or sedation for a medical procedure , but these can be anticipated in many cases if the surgeon and anaesthetist are made aware of the condition in advance.The onus is on the patient and their family to start this communication. Problems and complications may still arise, as there are risks involved in any surgical or anaesthetic procedure, which cannot be anticipated. With knowledge and awareness the avoidable, expected complications will be minimised.Download Leaflet

Congenital

Congenital Myotonic Dystrophy is the most severe form of the condition. The baby is affected with myotonic dystrophy because the mother has the condition. Frequently, she is completely unaware that there is anything wrong with her and she may have little or no symptoms. Usually, a grandparent is also affected and will have the mildest form of the condition with cataracts and/or diabetes .

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