When you live with chronic illness ‘crashes’ are inevitable no matter how hard you try to avoid
them. Getting the balance between doing too much or too little is like walking a tightrope. Here are my top tips to spot and to manage crashes.
Help wanted. Hours must be flexible, pay poor. This job will interfere with your social life. Those with a morbid fear of doctors need not apply. The sheer…
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…
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…
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 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…
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…
My kids have pain. It’s real. One of the hardest things for me as a mother is to see them in pain and not be able to magic…
My Pilates journey. At the medical conferences that I attend, be it related to Charcot Marie Tooth disease (CMT), Ehlers-Danlos syndrome (EDS) or for EDS kids, people ask the experts…
