The unchartered waters of life without a diagnosis….
Undiagnosed Children’s Day 2020 with SWAN UK
A life less ordinary…. when your children are hell-bent on confounding the medical professionals…
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 💩???
” There are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns – the ones we don’t know we don’t know. ” Credit: Secretary of Defence Feb 2002… Continue reading “There are known knowns”…
I’ve noticed a theme in many of my blog posts – the titles often spring to mind based around music. Although I’m not quite sharing the lyrical prose, more precisely the sentiment behind Shakespear’s line: “if music be the food of love, play on!” I think it’s apt that music evokes so many thoughts, memories,… Continue reading Shiny happy people….
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…
Since I am writing this in the week that David Bowie died 😦 it seems more than a little appropriate that I get to use these iconic words in a blog post (thank you Let’s Dance)… Ironic also that I had already planned the title of this piece before news of Mr Bowie’s untimely passing… Continue reading Put on your red shoes…….