Fatigue. Chronic debilitating fatigue. Now I don’t mean being tired, tiredness and fatigue are very different things. We all get tired, our lives are busy, we put far…
Today all around the world members of the Ehlers-Danlos community and their friends and family will be wearing their stripes to raise awareness of the Ehlers-Danlos syndromes and…
Brunel University – Common (or not so common) Paediatric Conditions Last May I had the great opportunity of being welcomed to Brunel university to co-present a lecture on…
The great British cup of tea… I have to admit as I sit here cup in hand, I am slightly addicted. Meeting up with my with my girl…
The Memes from the upcoming ebook by Kendra Neilsen Myles and Sarah Wells, with a special section on Vascular EDS written by Deborah Roach. A sneak peak into…
Over the Iast couple of weeks I have had different conversations with people about their child’s school.Two families, at totally different schools, (and different schools to all my…
I spend far to much time in hospital waiting rooms, people watching helps to pass the time, keeps me sane. Somewhere between booking in and hearing your name…
Thirteen years ago I gave birth to my first child, as he enters adolescence (and I wonder how that could be possible) I realise a lot has changed…
Having a chronic illness or two is one thing but raising children with Ehlers-Danlos syndrome is another completely. I want to give you a little window into our lives…
So, you’ve been diagnosed with a rare disease, perhaps you are unable to do some of the things that you used to be able to do, or you…
