"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 again, I apologise for torturing you with yet more of my ramblings, two days running. However I couldn't let today go by without at least some recognition. To most people today is just another ordinary day apart from the fact 29th February only comes around every 4 years. However to me and many others… Continue reading Rare Disease Day 2016
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
May is Ehlers Danlos Syndrome (EDS) awareness month and since EDS is such a rare disease with very little knowledge, both within society and the medical profession, I want to spread as much awareness of this horrible disorder as possible. Before I go much further I should recap for some of my newer readers of… Continue reading Ehlers Danlos Syndrome Awareness Month
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! Yet again it has almost been a month since I have posted, sorry. So far 2015 has been filled with lots of emotions both good and bad, however finally funding has been approved to start treatment in London and I am pleased to announce I leave for my first two week inpatient hospital stay within… Continue reading I’m going to 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
Hi guys, I thought now would be the appropriate time to tell you all a bit more about my upcoming CD and explain more of the background to it. Over the past year God has been prompting me down a path to record this CD with my two friends Naomi and Andrew. As a group we want… Continue reading Under His Wings