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
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 Cannacares CBD gel capsules Product Review – (sponsored)
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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
Feature: ‘Find Me A Cure’
Very soon FibroFlutters website will have it’s own very unique widget for readers to search for appriate clinical trials for any illness anywhere in the World and Find Me A cure have already sent me some designs to choose from.… Read More #chronicillnessVOICE | Health & medical related mini-mag for everyone| February 2019 | #notjustpatients
‘Attending an event during the middle of hibernation was a little daunting but I wasn’t going to let that stop me from going. ‘
What a way to celebrate our newsletters 1st birthday … Read More Special edition Happy new year & ‘Happy birthday’ #chronicillnessVOICE 1yrs young| January 2019 ~ a health newsletter for everyone! #chronicillness #notjustpatients