I’ve been thinking about starting a blog for a while, but have always been shy to put myself out there online. Since finding out about all these fun rare diseases, I’ve had a lot of thoughts – good, bad, random – go through my head and I always find that writing it down really helps.
If I’m already writing then I may as well share so that others can (hopefully) benefit or at least find someone else going through a similar thing, or if you happen to have FAP and/or desmoid tumour then even better!
I didn’t realise it would be so hard to come up with a name for the blog, I work in marketing so also had to be careful not to go too cheesy. I realise that what I chose, ‘shrinking the silence’ does probably need a bit of explaining. Many rare diseases are not widely talked about or known about, yet there are lots of people who live with them every day. I’ve found that at times because you don’t hear a lot, it can be isolating and there is a lot of silence on information and finding common experiences. So by sharing more, I hope to shrink the silence and have more stories shared and found online….shrinking is also in relation to my hope for my desmoid tumour to continue to shrink!