I’m looking for comments here from blogland – do you have any ideas of how I can raise awareness of Cowden’s Syndrome and Lhermitte-duclos disease?

I tweet – but I bet there’s more I can do.   Thoughts?


6 thoughts on “Tips?

  1. From the social media point of view – do you have Facebook as well as Twitter, and what about Pinterest, I have boards on there specifically for ME and Meningitis in adults awareness. Do you share your blogs on any other social media sites? There’s also Google+ but you need to really work at that one to get any interest.. It’s a matter of adding/following as many people as you can on as many networks, and asking them to share to their social networks as well. Good luck, if you need any more advice just ask 🙂

  2. If anyone — health personel, my sisters finances mothers cousin, a stranger in the dressing rooms at Express, shows an interest in my illness… I write down my blog address for them. 😊

    • “The stranger in the dressing room at Express” – HAHHAAAAA! That’s awesome! Do you find yourself at ease in bringing it up? Does it come up naturally in convos? Is POTS considered a rare disease? If so do you network with Global Genes Project?

      • I used to not bring it up and be kind of nervous, but now I’m not at all because I’ve learned I won’t get negative reactions. One way it comes up is because I sometimes use a wheelchair and people will ask why. Another way it comes up is my companion (Mom/fiance/friend) will say “you should sit down for a minute” and people will ask why. I always just say, “I developed an autonomic disorder 4 years ago and it makes it difficult for me to be upright for prolonged periods of time” A lot of people leave it at that and I, of course, don’t give them my blog. However, some people ask more questions. It is these people who I share my blog with.

        Finally, something about me compels people to tell me personal things in public. It happens at the library, in stores, in the waiting room of a doctors office… everywhere! It’s a good thing because it is a handy thing to have happen to you if you want to be a good social worker! I don’t know if it is because I smile at people or what… I’ve been told about people’s spouses leaving them, a woman’s foot hurts, a woman in an argument with her daughter, someone has cancer, I remind them of ______ and then tells me all about them, they don’t have enough money, their child is on drugs… All of this stuff out of nowhere! I never even knew it was weird until the age of 20 when it happened in a Goodwill. My friend said, “That was really weird that lady just told you her she feels she has lost her daughter to drugs…” I was like, “Really?” He said “…. uhmmm yeah! You weren’t even looking at her or talking to her.” So that’s when I learned that doesn’t happen to everyone. Anyways, so people confide in me, I empathize with them, and then they always end up asking me my profession. I say I’m unable to work. They ask why, I say an autonomic disorder, and if they ask more questions, I answer them and share that I have a blog.

  3. Hi My colon peeps on the colon club website have good suggestions. They say to start small and local. I like the colander too. Cowden’s was only mentioned once in the three years I have been on it.

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