Ehlers-Danlos syndrome: the most neglected disease in the history of medicine.

"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…

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Rare Disease Day 2016

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…

Beauty in the Brokenness

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…

Hi Ho Hi Ho its off to London we go!

Hi everyone, I apologise it has been such a long time since I've last posted anything; its been a very difficult time recently and new health problems keep cropping up, it is clear this neuromuscular problem is much more complex than anyone originally thought and honestly I haven't been coping very well. In short life…

EDS Awareness Month: Types & facts of Ehlers Danlos

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…

Ehlers Danlos Syndrome Awareness Month

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…

Haircut for Cancer

On a whim this week I decided to get my very long hair cut and donate it to 'The Little Princess Trust,' a fantastic charity making wigs for children suffering from cancer. Cancer Research UK provide statistics which show that around 30 children each week are diagnosed with cancer and therefore potentially each year alone there are…

Depression Awareness: Start to Talk to Start to Change

Last week was Depression Awareness Week and sadly I never got the chance to do a post, but I thought to myself, every week should be a time to raise awareness of depression in an attempt to quash the awful social stigma attached to this illness and therefore my part in raising awareness will be today…

London: The Toughest Week Yet

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…

God is our safety

"There is only one way to happiness and that is to cease worrying about things which are beyond the power of our will." Epictetus   In the next few days I go back to London again for my next inpatient stay in hospital which I have been dreading after the incredible pain from the time…