Okay, how did we come about………
18 months ago, my counsellor from MIND asked how I felt about setting up a support group for people with Fibromyalgia as there were many clients there who were finding it difficult to find the support that they needed.
Living only a 25 minute chair distance from the MIND centre, which is at 19 Norfolk Street Sunderland, and with having no luck at finding a group close enough for me to get to I decided ‘well, yeah! okay, go on then’ 🙂
‘I will meet new people and hopefully make some fibro friends too.’
Prior to that I stumbled across a community forum for people with fibromyalgia to go and find support and advice about anything Fibro. I was terrified of jumping into posts not knowing the forum/community etiquette and for being in unfamiliar territory especially not being a Facebook user. The forum is ran on behalf of a charity FibroAction who fundraises to raise awareness of the illness and to help promote healthy research into the condition to the members.
It wasn’t long before I became a full-time fixture and part of the fittings and now help as a Volunteer Administrator and spend my time helping to educate other members about Fibromyalgia and I also help to raise awareness of Fibromyalgia and other chronic illness and invisible illnesses. 🙂
After 20 yrs of living in chronic pain and not knowing why, being told that it was because I was depressed and needed counselling and then turning my back on the NHS for a few years because being told ‘keep taking the painkillers’ wasn’t enough…
… I now have a good support network around me and spend my time sharing my knowledge and experience with others just like me 🙂
FibroFlutters was born on International Fibromyalgia Awareness Day May 12th 2014 and we have just celebrated our first birthday 🙂
I have a co-founder who has helped me to raise awareness of our group through the use of social media and as helped enormously to get it up and going, between us FibroFlutters exists and hopefully will continue to do so 😉
WHO WE ARE NOW
Locally we’re a Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK …
… but we also offer online support, advice and advocacy via our social media network , chronic illness portal, across the globe.
We are a Patient Advocacy Organisation & online social media communications network. Our services are for people affected by chronic illnesses and rare disease. This includes care providers, health professionals and those within the medical healthcare related industries. #notjustpatients
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.
To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness & #raredisease patients can receive the type of care and treatments that they need.
The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.
Bridging the gap between stakeholders is a different type of awareness raising. It involves sharing events and campaigns by clinicians, pharmaceutical companies, patient led projects, healthcare providers… the list is quite variable. We have newsletters to ensue this which uses our slogan – #chronicillnessVOICE for everyone #notjustpatients
The UK’s First Network of Connected Community Maps by It’s A Doddle
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