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.
Happy Thanksgiving Huge #gratitude to all of our #American #friends for your #support of our #healthcare #advocacy + for your #friendships. #strongertogether #chronicillness.Wishing you all wellness + a fabulous day from @FibroFlutters + me @Scrufton73 aka Carole
Our loyalty has remained since 2014 and as a result today on our fifth birthday I ask you to please help us to support their 2019 International Awareness Day Campaign by ‘becoming Fibromyalgia Aware’. Please visit the website to learn about the condition, but also learn about the work that the charity does in support of research and education.… Read More May 12th International Fibromyalgia Awareness Day – Happy 5th Birthday FibroFlutters
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
This meeting is also for our Fibromyalgia members and Fibromyalgia Action UK supporters as an extra meeting on top of our sister FMA UK Fibromyalgia group’s meeting on the FIRST MONDAY OF THE MONTH which our members are welcome to Join.… Read More Home news | Next meet up is on 20th November
It is a modern platform, with a young and fresh approach to raising and using patient-voices to help the healthcare industry produce better products, and services, with you as the patients being the shareholders.… Read More Are you a ‘SAVVY’ patient? come and check it out!
Featuring >>>
Love Amazon? Sign up to Amazon Smile and support EDS UK!
Meet our new Medical Advisory Panel Members
Cheer on our Great North runners!
I cycled 5,000 miles round Britain to beat my illness and found kindness I never knew existed
Kirsty’s Big Fun Run challenge
Ezra the Zebra book coming soon!… Read More The Ehlers-Danlos Support UK | Your weekly update from EDS UK! | 24 August 2018
The problem was I didn’t need counselling for the name-calling, it wasn’t an issue because I just ignored it. I was being bullied for many other things, I was always ‘different’ and made to feel that way by pretty much everyone around me. … Read More Why I support ‘Respect Yourself’ | Carole Sian | 35 years ago things were a lot different
There are a good number of people in Sunderland with Fibromyalgia and varying other long term chronic chronic conditions, actually, and it shocked me in the beginning.
At the time I was volunteering and advocating for a charity called FibroAction and so became a voice for the charity across the NE UK with FibroFlutters members, and readers, this is because even though there were only 5 of us but we spanned 3 counties!… Read More About Us -How we began
