So, there’s been a bit of discussion on The Twitter (my pet name for it) about how to hash tag Cowden’s Syndrome. You see, this is such a rare syndrome that it has more than one name! You can’t make this stuff up folks. Urg.
Now, of course, I’m not the Twitter police, but as I continue to tweet more I am seeing the importance of hash tags to categorize your tweets to (I feel) reach a broader audience. If you check out this website you can read the Why/How/What of how important it is to connect the dots in healthcare social media, and I even registered #CowdensSyndrome there because this has weighed so heavily on my mind.
How can you get your healthcare message out there when your syndrome has 22 different names? This really bugs me! There is #RareDisease, (again very broad), but I feel very strongly that “Cowden’s Syndrome” needs to be seen on any and every social media outlet. The question is: “How should it be seen?”
I have never liked “Disease” in any of my medical stuff since diagnosis. I already have enough trouble as it is. Disease has such an ugly connotation (for me). I have always gravitated more towards “Cowden’s Syndrome” for some reason. Semantics? Probably. But when it comes to the Twitter, the hash tags rule all! I try to include #pten (for PTEN mutation) as often as I can, just for argument sake….but, I don’t know what to do. I just want my voice to make a difference.
If I tweet something about one of my medical appointments, for example, and use #CowdensSyndrome, but another person uses #CowdenDisease, and then a 3rd uses #CowdenSyndrome, there’s no continuity. There’s no streamlining of data. You see? (Not that there are so many of us [but there is a small core group of us! We are growing and connecting with one another!] tweeting things, but you get the idea, right?)
The bottom line is I can only do what I can do. But if anyone reading this has comments/advice from the #hcsm (healthcare communications and social media) standpoint, I would really appreciate some thoughts here.
Am I doing it wrong?