The Dystonia Medical Research Foundation (DMRF) Canada is a Canadian registered charity and their mission is to advance research for more treatments and ultimately a cure for dystonia; to promote awareness and education; and to support the needs and well-being of affected individuals and families.
As part of their mission, they provide an international blogger network. I am delighted to be part of this network and to share information about dystonia and its treatment with Botulinum Toxin on this blog.
A better understanding of the dystonia helps the patient to become actor of its treatment and to develop the confidence that the patient needs to successfully carry out a specific behaviour in a given situation (self efficacy), a key to minimise disability due to the dystonia.
Clear written information about treatment and possible side effects (swallowing difficulties, double vision and droopy eyelid) is part of a well informed consent procedure to treatment and allows the patient to face the side effects when they occur, with appropriate management and less anxiety.
Networks are not beneficial for patients but also for doctors! I have founded in 2011 the British Neurotoxin Network to share information and best practice between UK injectors for neurological indications. I also look forward meeting again my Canadian colleagues from Quebec for a dystonia day in May 2018.