Update – July 2014
This is a post about my health (be warned, it’s a long one, I’ve tried to trim it down as much as I can) (it’s also a bit graphic, so perhaps don’t read this before/while eating). For better explanations of…
This is a post about my health (be warned, it’s a long one, I’ve tried to trim it down as much as I can) (it’s also a bit graphic, so perhaps don’t read this before/while eating). For better explanations of…
Recently there was a programme on Channel 4 called My Last Summer, about five terminally ill strangers who get together to prepare for the best death possible. We laughed with them, cried with them, watched them deteriorate and watched as…
I got an email through from Together for Short Lives yesterday with this letter attached; I'm going to the Department of Health to meet Dr Dan Poulter MP to discuss my care and how things could be improved! He said…
My name is Lucy, I’m 20 years old and I have a life limiting condition. You probably won’t have heard of it, it’s called Ehlers-Danlos Syndrome (EDS). It’s considered rare, but is becoming more prevalent as awareness and understanding of…
We’ve all heard of cancer; the dreaded “C”. While there is still much to learn about cancer, and many lives lost to or affected by it, there are lots of charities to support these people and their families and a…
Recently, my health has deteriorated again. Last year was a fantastic year despite my health and, though I was poorly, I was relatively stable in some aspects. I pushed myself harder than I thought possible to sit up, building up…
To vote for Molly and I call 0844 646 0202. Calls cost 5p from a landline and you can vote more than once. All votes will be greatly appreciated. thank you
Today is rare disease day. I have a few rare diseases, so jeans for genes day is very important. Ehlers-Danlos Syndrome, though the hypermobility type is becoming more common, is considered a rare disease with a prevalence of 1 in…
Christmas is a lovely time of year. I know not everyone enjoys it, and we all feel the pinch after buying presents; but I quite like it. Not because I get presents, not because of the food (especially since I…
Yesterday I went to the Houses of Parliament for the Together for Short Lives reception to encourage MPs to adopt the eight priorities they have set out for the next government. I was a guest speaker, giving a speech about living…