After having constant dislocations in my knee where the PVNS tumour was removed from 6 years years previously had caused major damage. This was worsened with my hEDS which effects all of my joints. … Read More Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020
Okay, let’s get on with it! The following information is to help give you reasons for why you should endorse Carole for #WEGOHealthAwards… Read More Reflecting back on 2020, come look at my advocacy! Then will you please, please, endorse me. #WEGOHealthAwards
Bringing a varied selection of #healthnews #medicalnews #pharmanews #researchnews to you in relation to many aspects within the #healthcare #medicalhealthcare & #pharmaceutical landscapes. … Read More My favourite Health Medical Research Patient & Pharma related Paper.Li newsletters for everyone #notjustpatients | Self-Updating
Looking for a local support group then please sign up for a basic membership to become a member, it’s free and you get access to their magazine ‘Fragile Links’.… Read More Ehlers-Danlos Syndrome Awareness in the Month of May
Many thanks for supporting the work that the charity Fibromyalgia Action UK does towards raising awareness through educating people about what fibromyalgia is. Also, through the many support groups that the charity has throughout the UK that all support patients with fibromyalgia.… Read More May 12th International Fibromyalgia Awareness Day
Not everyone with EDS has hypermobility, and not everyone with hypermobility has EDS!… Read More Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?
‘…The Dario LC Blood Glucose Management System features a lancing device, glucose meter, smartphone app, and Bluetooth connectivity to allow you to easily analyze readings, spot trends, and share results.’… Read More Guest content: Managing Diabetes: How Technology Can Help
In all honesty I am amazed that I have done all this especially considering my health was quite bad last year. I do tend to distract myself as much as possible, but crikey, I got around quite a bit didn’t I. – closing thoughts… Read More Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton
It is time to pat yourselves on the back for being actively involved to help create change.… Read More Merry Christmas, happy holidays & all the best for 2020. Thank you for your support.
What are a wonderful read this is by Kathleen Elizabeth, aka blogger of ‘The Invincible Summer’, as she talks about her first time as a disabled dog handler in a dog show. She eloquently describes in detail about the highs and lows of her experience whilst giving us a brilliant explanation of how this role… Read More Our First Dog Show – Competing in Rally Obedience as a Handler with a Disability – The Invincible Summer
