The Dystonia Medical Research Foundation (DMRF) has a Twitter account and they put out the call for dystonia sufferers and anyone else to tweet about dystonia on one particular day, July 22nd. Twitter is a messaging system limited to 140 characters that a lot of individuals are using, mostly as a “microblog” and many companies and organizations are using for public relations.
We decided that participating in this event was important especially since a significant portion of our patients have different types of dystonia. Also, the general public and medical community needs to be more informed about it.
Through our account @UFMDC, we posted about 40 messages tagged with #dystonia. Together with the other tweeters #dystonia reached the number 38 position of most tweeted terms (or “trending topics”) for the whole day and it was #26 at around 4pm eastern. Dystonia sufferers posted their experiences while all of us posted educational links or news stories on dystonia. Many people learned about dystonia that day and dystonia patients made connections with each other.
The only organizations to participate were the DMRF, Tyler’s Hope and the UFMDC. We look forward to trying this again at some point and hopefully we can inform even more people about this disorder.