I have three children, all affected differently with elements of Hypermobility Spectrum disorder (HSD), Hypermobile Ehlers-Danlos syndrome (hEDS) and Charcot Marie Tooth disease (CMT) and new to the…
he story tells of a prince who wants to marry a princess, but is having difficulty finding a suitable wife. One stormy night a young woman drenched with…
In April I had a call from the head of my children’s primary school to ask if my two youngest children (who attend the school) would like to…
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…