"No other disease in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos syndrome." Professor Rodney Grahame. When I read this I am shocked and saddened to the core, you may think this statement is incorrect but Professor Rodney Grahame is the top UK specialist in the field of Ehlers-Danlos… Continue reading Ehlers-Danlos syndrome: the most neglected disease in the history of medicine.
Hello everyone, I apologise for taking such a long unexpected break from posting here. The past months following July have been a rollercoaster of events, which have been some of the best and worst months of my life. However I thought it was now time to get back to writing and update you on what… Continue reading Beauty in the Brokenness
Hi everyone, I apologise for not getting a post uploaded last week for EDS awareness, I really had hoped to get this post up before now however I've been in and out of hospital a lot last week and as usual EDS has been getting in the way of my life and the things I… Continue reading EDS Awareness Month: Types & facts of Ehlers Danlos
Hey everyone, I hope you are all well and enjoying this beautiful weather. I got back from London on Sunday evening with a sigh of relief and exhaustion as I collapsed into bed. It is not an exaggeration when I say I am extremely happy to be home despite how lovely London is. Last week… Continue reading London: The Toughest Week Yet
Hello everyone, I am sorry I haven't updated in such a long time, to be honest I've been struggling to find the words to tell you all how London went and I apologise in advance for the complexity of what I am going to tell you, please bear with me as I am struggling to… Continue reading An update from London
Hi everyone, I hope you're all well and enjoyed a lovely Christmas! I apologise my blog has been inactive for almost a month now but things have been very difficult for me over the past 4 week and I have spent most of my time in hospital. Thankfully though I did get discharged from hospital… Continue reading A long overdue update
Hey everyone, Sorry it has been awhile since I have updated my blog, I've been having a very difficult time. Over the past week I have had two dislocations of my "good" shoulder, meaning two trips to hospital and two lots of sedation to relocate my shoulder. To say the least, this has definitely been… Continue reading Limbs are not a right to be demanded, they are a gift.
Hi all, I had planned to update at the end of the week but that just didn't go to plan, I've been to sore and weak and overall the past week really hasn't been easy, in fact some of it has been awful. This is the truth of living with a chronic illness, it hurts a… Continue reading “Do you believe I can do this?”….Become what you believe
As I've explained in previous posts, I have always had symptoms and signs of Ehlers-Danlos since I was a baby. However it wasn't until I was 13 years old when my life dramatically changed, at the time I thought it was a short term simple injury, little did I know that 8 years later it… Continue reading 8 Years
Once upon a time...Once upon a time I could run, dance and move with ease. Once upon a time I could go out with friends, stay up late and still be bursting with energy. Once upon a time I could walk my dogs, draw, play piano and do other things I love without pain and… Continue reading Once Upon a Time…