What’s in a name: Ehlers-Danlos Syndrome gets an important makeover
It’s rare for a medical condition to have its sub-types reclassified. It happened to autism a couple of years ago and there was uproar as people were worried they would …
Category: Ehlers Danlos Syndrome
A 16 year quest to diagnose our rare bendy daughter
It’s often difficult to cope and find support when your child has an uncommon or rare condition. Often, there is little understanding by the GP and no more than that …
The pioneering STARS putting patients at the heart of healthcare
Long ago, when my both my boys were under three and I was still perfecting the art of smiling while drowning (lest anyone should think I couldn’t cope with motherhood), …
Professional pleasantries: Why Jenny thinks complaining can sometimes be counter-productive
One of the great things about having Special Needs Jungle for me, is getting to meet other women who also happen to have children with special needs. One such laydee …
Sons, Mothers and Ehlers Danlos Awareness Month
It’s the last day of Ehlers Danlos Awareness Month and, of course, I’ve left it to the last day to write anything about it. It’s not that I haven’t done …
Fightin’ talk so my ski-loving son can beat Ehlers Danlos pain
Youngest has just returned from a week’s skiing to Italy with school. He went for the first time last year and loved it. Son1 also went but did not love …