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
Many rare disease communities are very small which makes it hard to raise awareness by themselves, so through joining forces during this week their voices are strengthened in numbers and become one giant ‘united voice’ for rare disease awareness.… Read More It is time to ‘dazzle’, ‘strut your stripes’ and share ‘rare voices’ for #dazzle4rare2020! 9 – 14th August
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
It was easy to notice the fact my mobility wasn’t as stiff; pain was lesser than usual, and I wasn’t getting numbness with pins and needles as much in my hands and feet. … Read More Product Review: Cannacares CBD gel capsules, a food supplement to compliment your health management.
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?
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
I decided to test how long it would be before my back began to ache when sat in a regular dining chair, one with no arms and a straight back. It wasn’t long before I began to notice little things….… Read More Stretch, 1, 2, 3, 4… Bend 1, 2, 3, 4 … | ActivePosture shirt – Product review | Carole Scrafton (sponsored post)
What I have explained in this post is the chain reaction of ‘pain’ and ‘inflammation’ that I fight to prevent on a daily basis and when it gets as bad as this the ‘sciatic’ pain is so intense that it really does make me cry.
… Read More The burdens of pain management, inflammation and sensitivity to anti-inflammatories. | Carole Scrafton | 27 March 2019