Last year, when I was diagnosed with Cowden’s Syndrome, I panicked beyond belief. I didn’t know which way was up and while I’m not going to repeat here all my fear from that point in my past, I am going to write about why I took up Twitter.
I didn’t understand Twitter for the longest time but now that I’ve gotten the hang of it (with hashtags, tweet chats, etc.) I see that Twitter really has the power for good. While I’ve found some connections there in #btsm (brain tumor social media), I’ve tweeted more and more, and found some other applicable hashtags of things I’m interested in. But the main ones I’ve used as of late are #raredisease and #cowdenssyndrome.
Through those hashtags (and some other networking and sharing of my story) I’ve connected with a handful of others who also have Cowden’s Syndrome. I created a page with their blogs because it helps me to know I’m not alone in this – and I want others to know that maybe CS isn’t all that rare! Some of them do not have a blog so I have no contact info for them (but if the 2 happen to read this – and you’d like to be listed….please email me – I’d love to list you here.)
One of the things that I’m passionate about since my diagnosis is raising awareness of this “rare disease” Cowden’s Syndrome. (I use quotes because I don’t think it’s that rare!)