4. Reasons for the Website
It was decided that it might be useful to put available information from many sources onto one website.
-chronology of dystonia- history over the years, books and paintings where it was represented, mention of it in medical literature treatments
-incidence and prevalence of dystonia
-types of dystonia- a system to help patients understand the classifications and terminology
-resources – names of foundations, associations and books patients may find of use
including social media support groups
-list of sensory tricks people had been using – this odd phenomenon has been reported in clinical studies and patient biographies. Here examples are collected all in one place
-history of the understanding of sensory tricks
-links to Youtube videos of a few people with dystonia who have already gone public and talked of their struggles
-funny, touching or clever quotes from people about what it is like to have dystonia – the humorous ,sardonic or stoic thoughts of patients that may be inspiring
The website would be a resource, so that those who got the diagnosis or their families could learn more about it in layman’s terms and feel supported and not alone facing it.
The site would also house the optional and anonymous surveys.
A website permits immediate free international access to information for anyone with this condition. It seemed an efficient way to reach patients and their families.
Lived Experience With Dystonia 