The prestigious annual international Edgar Stene Prize is a competition for patients who live with rheumatic and musculoskeletal (RMDs) conditions, that includes fibromyalgia and we encourage our supporters to submit their entry to share with other people how they manage their condition. The 2016 Prize was won by Simon Stones, now trustee of FMA UK, who inspired the judges by sharing how his life was affected by fibromyalgia and rheumatoid arthritis and how he had conquered both conditions to live his life to the full and to fulfil his dreams of helping others with the same conditions.
The launch of the 2017 Edgar Stene Prize Competition will take place at the Opening Plenary Session of the forthcoming European Congress of Rheumatology in Madrid, Spain, on 14 June 2017. The Prize will be awarded to the winning essay on the topic “Time is joint - Joints over time”. Early diagnosis and access to care in rheumatic and musculoskeletal diseases (RMDs) - the ideal world and the reality - my personal story”.
For many people with RMDs it can be an odyssey from doctor to doctor until they finally receive their diagnosis. For several RMDs valuable time is lost and damage to the body can be irreversible. For those who live in daily pain over a long time the situation can become unbearable. Early diagnosis and access to optimal care and treatment are therefore vital for people affected by RMDs.
We invite people who live with fibromyalgia to write about their personal experience - how long did you wait until your diagnosis was confirmed and how did you cope with the uncertainty, pain and fear during that period? Would an early diagnosis have made a difference from how you are feeling now? Do you have access to care and optimal treatment and management of your disease? What would an ideal situation look like and what is your reality?
Deepak Murji raised over £600 for FMA UK by climbing Britain’s highest peak, Ben Nevis, because his friend, Donna, suffers from fibromyalgia. Deepak speaks of his experience: ‘’I did Ben Nevis yesterday and managed to get to the top.
It was tough but well worth it. Weather was not the best, but I enjoyed the experience of walking in the clouds as I headed for the summit. My legs are really aching.It looks like it's going to take a few days to get back to normal.’’
We are very grateful to Deepak and sure that Donna is proud of him.
To sponsor Deepak and support Fibromyalgia Action UK's work, please go to Deepak’s JustGiving page at the link below:
Newcastle Fibromyalgia Support group introduced their new mascot Dotty Duck when they had a
Charity Barrow at the Metro Centre, Gateshead.
Dotty was a great success with young and old alike!
Talking about ducks ... our office admin & volunteer were fed up having to remember where they had parked their cars
... so decided that a couple of FMA UK Duckies
would make excellent arial toppers.
What is the most unusual thing you have done with an
FMA UK Duckie ???
Healthwatch Trafford are conducting a survey into Fibromyalgia to find out peoples experiences of the health services they use.
Although this survey is being done by Healthwatch Trafford, if you live elsewhere in the country please still complete the survey and the results will be forwarded to the relevant health areas.
Survey closes 21/08/16
On 7th August Kay Sharpington held a baked bean bath in aid of Fibromyalgia Action UK at the Farmhouse in Kesgrave, Suffolk, raising a grand total of £750 for the charity.
At the event, Kay's family and patrons of the pub helped to pour 11.5 kilograms of beans over her, donated by Tesco Martlesham and a Girlguiding UK leader. As well as raising money for FMA UK, the event also increased awareness of the condition among the pub's customers. Several knew friends or had family members with fibromyalgia and were glad to see its profile being raised.
Kay said "I'm really grateful to everyone who has donated so far. Although fibromyalgia makes daily life difficult, I’m glad that I can do something to increase awareness of the condition, and raise money for research into it. I'm fundraising so that in future people will have heard of the illness they're being diagnosed with, so it becomes a topical issue, and so that eventually effective treatments and a cure can be found."
To donate go to http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=kaysharpington
''Many people in the UK live with pain and fatigue every day as they battle fibromyalgia. The following documentary tells the inspiring stories of how some sufferers are taking back control of their lives''.
The film was recorded and produced by Adelaide Arthur, who kindly share it with us:
- Benefits Helpline Closure
- Michelle Birks and her husband run the Edinburgh marathon for FMA UK
- Fibro concert in Northfleet, 30 September
- Report on work, best practice and recommendations to address the needs of people living with musculoskeletal conditions
- Hannah Edwards 25 Km Thames Bridges Trek challenge for FMA UK
- Event in Cardiff, 13th August