Ehlers-Danlos Syndrome Type 3/Hypermobility EDS (hEDS) is a life-long genetic disorder, which is caused by an abnormal mutation of an unknown gene. It causes a fault in the collagen, which is the glue that holds our bodies and organs together causing it to become weak and fragile affecting the whole body. Collagen is found in… Continue reading Ehlers Danlos – More Than Just Bendy
One of the most challenging things about having chronic pain is attempting to articulate exactly what hurts and what type of pain it is as there’s so much often at the same time. As I struggle to properly explain this out loud, I thought I would have a go at putting it all down in… Continue reading Types of Pain EDS Causes Me
I haven’t written a blog post in over a year, I can’t really explain why as I’m not entirely sure myself but it’s 2020 now and I finally have the motivation to start blogging again. Over the last few months I have been thinking about my life with EDS so far and thinking about how… Continue reading My EDS Story
Ehlers-Danlos… the travel companion no one ever asked for or wanted, but as with all Chronic Pain conditions we’re all in this for the long haul and so even when we go holiday, EDS comes along too. I have recently returned from two weeks of travelling around the West Coast of America (with a 9… Continue reading Travelling with Ehlers-Danlos
In recent years, there have been numerous articles around the link between diet and pain. Now, I was always one of those people who disregarded this and thought it was a load of nonsense. “How could what I eat possibly affect my pain levels?” However, a few months ago after a period of feeling ill… Continue reading Diet and EDS – Is there a link?
All too often in the media nowadays you see articles about people who have been vilified for parking in a disabled bay when they don’t look “disabled”. Sometimes this is done by a note left on someone’s car windscreen, sometimes it’s verbal abuse upon getting out of the car and other times it is silent… Continue reading Not Every Disability is Visible…
When I was first diagnosed with EDS, I never really thought that the very thing causing me so much pain could teach me some of the most important lessons I’ve learnt but nevertheless it has. After having EDS for 24 years now (you’re born with it, even if symptoms don’t show until later in life)… Continue reading 20 things I have learnt from my disability
Since May is EDS awareness month, I thought I would write an open letter to those who don’t know or understand much about it. Dear friends, family and even strangers, below are some things that I want you to know and understand… I am scared, terrified in fact as I have no idea what the… Continue reading EDS Awareness Month – An Open Letter
Ehlers-Danlos Syndrome Type 3/Hypermobility EDS (hEDS) is a life-long genetic disorder, which is caused by an abnormal mutation of an unknown gene. It causes a fault in the collagen, which is the glue that holds our bodies and organs together causing it to become weak and fragile affecting the whole body. Collagen is found in… Continue reading hEDS – What Is It?
Dear 13-year-old Lauren, Tomorrow dad will take you to school. You will kiss him goodbye and tell him you love him and you’ll see him later. You’ll run into the common room to meet your friends and you’ll talk excitedly about the Christmas Feast that will take place that evening and how next year you… Continue reading A Letter to my Younger Self