What’s in a name?

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?


7 thoughts on “What’s in a name?

  1. I am more on Twitter on my iPhone rather than desktop so my sampling comes from there. If you search just plain cowden in the twitter app’s search section, I see tweets with just Cowden, Cowden’s – no hashtags. Then also appears Cowden along with any hashtag, -syndrome, -ssyndrome, -sdisease,etc. Since we’ve done a good variety of hashtags in the past few days, you can see the overlap. The only way things would be missed is if you spelled out more in the search box than just cowden – or in the case of my poor typing, spell it wrong. So it’s not so much the tag we use, but the idea that folks should search more broadly. Unfortunately we can’t show a sample search …. Or you could place a sample twitter search in your blog contact lists so we all know how to search for more contacts…. Good topic – affects more than just us!

    • I think it’s a personal choice of using hash tags or not – personally, I think they are needed because that is how the tweets are categorized, does that make sense? I have done a Twitter search at times of “Cowden” also and I have found a myriad of things that don’t appear to be related to Cowden’s Syndrome – hence the import (to me) of using “#” plus whatever term.

      I love your idea about making another page on here of a way to search for Cowden’s Syndrome contacts/topics on Twitter. The broader our reach, in any social media format, is key! Maybe it’s not so much the HOW but the fact that our voices are reaching more!

  2. Man, that is the kind of thing that would big me too! Like there are so few of you and if people are using different hash tags, then you are being seperated! I think blogging about it is a good thing, and the simpler the better for the hashtag. Good luck!

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