Tag: complex

Same but different….rare as Unicorn 💩???

This year 28th February 2018 is the worldwide celebration of Rare Disease Day.  The very first ever Rare Disease Day was held in 2008 –  a leap year so the perfect occasion for the initial 18 countries that signed up to celebrate. Every year since, countries across the world have united to raise awareness of… Continue reading Same but different….rare as Unicorn 💩???

(Wo)Man’s best friend ❣️

This is a post I didn’t think I’d write for many years to come. One I shouldn’t even be thinking of composing. It’s not right. It’s not fair but here it is. I am also acutely aware that this ramble may be perceived as very self-indulgent. Far too many of my good friends have lost… Continue reading (Wo)Man’s best friend ❣️

Once Upon a Time….

Let me tell you a story. Are you sitting comfortable? Then I’ll begin… Once upon a time there was a (relatively) normal family. Let’s call them the Jones’s, although I don’t think may people will be aiming to “keep up with the Jones’s”  once they have read this. In fact perhaps, it’s more a nightmare,… Continue reading Once Upon a Time….

Shoulda, woulda, coulda…..

I’m not often given to introspection or too much dwelling on the past; after all, it rarely helps in changing anything going forward and dredges up old emotions and difficulties that you can’t fix. Indeed, as my Father is so fond of saying “If your Aunty had bo**ocks, she would be your Uncle!  (so couth,… Continue reading Shoulda, woulda, coulda…..

D-Day….Red shoes Part 2…

Yesterday was D-Day – The Day I spoke at the Rare Diseases UK AGM in front of various learned bods and alliances of support groups etc. I have had so many wonderful messages, e-mails and texts asking how it went and am truly overwhelmed by the support; it means a lot. Since everyone was still… Continue reading D-Day….Red shoes Part 2…