FMA UK will be attending the BSR conference in Glasgow next week. As a result our office will be operating in a reduced capacity with staff and volunteers helping out at the conference. We are looking forward to the conversations that we will be having with medical professionals and spreading the message about fibromyalgia. This is the single biggest event in terms of the distubution of booklets and material targetted at professionals.
With it being on the offices doorstep we dont have boxes of literature being posted around the country which makes organisation a lot simpler :) I am sure we will have some material to share after the conference and will post anything relevant on our facebook page during the event.
Sally Richardson will walk from London to Brighton to raise funds and awareness about fibromyalgia. Sally told us her story: ‘’I've suffered with myofascial pain syndrome for over 13 years as well as fibromyalgia and recently diagnosed with chronic fatigue syndrome too. 13 years ago I got hit by a car and knocked off my bike and suffered damage to my lower back and left leg.
I recovered slowly over few months but was never the same. The doctors believed my brain never recovered from the shock of the accident. My diagnosis was slow and took 3 years. I tried everything possible as well as many different medications. I became so depressed and like a hermit thinking I couldn't stand it any longer. I lost my nan suddenly in 2011 and it made me wake up.
I realised that there was more to life and I was certain there were people with bigger problems than me.
I had good days and bad and decided I needed to work part time as full time was too much and I couldn't stand not working. I went to fibro clinic and pain clinic and got the help and support I needed to understand the condition and to learn to understand it and live with it and get the correct medication and treatments to control it.
‘’I and my partner James Sanderson are doing the Great Manchester Run on Sunday 22nd of May for fibromyalgia for my auntie Dawn who we sadly lost back in October 2015 to this illness...I am doing this for Fibromyalgia Action UK as I feel this is a very close illness that has touched me and my family's hearts an seen my auntie loose her life to it...I have also come to realise that not a lot of people have heard of this illness and there needs to be more information out there, more treatments and medication as there isn't a lot out there for suffers...Anyway, I'd love for you all, family and friends to help me bring this illness to light by helping me raise the money for Fibromyalgia Action UK. Thank you so much for taking your time to read this, love loads Anna xxx’’.
To donate to Anna's JustGiving page please visit: https://www.justgiving.com/anna-baines3
For the first time the British Society for Rheumatology (BSR) will be holding a one day event on Tuesday 26 April 2016 for patients. The event runs alongside the BSR rheumatology conference and gives you, the patient, an opportunity to hear from world class experts in sessions tailored to the patient experience at the Scottish Exhibition and Conference Centre, Glasgow.
This event aims to be interactive with question-and-answer sessions with physicians and healthcare professionals, supported by NRAS, NASS and Arthritis Care. You will learn about the latest information on medication and new treatments that can improve the quality of your daily life.
- The future of Biosimiliars
- What patients want from a rheumatology service
- Sleep and fatigue problems in rheumatic disease
- Foot health education
Whether you are recently diagnosed or were diagnosed many years ago, this event is a great way to connect with people with similar diseases and gain confidence from learning how others manage their disease and hear from world class experts in the field of rheumatology. View the programme online
Register online for £10 + vat
To include: Registration is from 10.00. Lunch is provided and access to the BSR charity village stand / patient area and full day event. Delegates also receive a ScotRail Conference Rover ticket which gives 5 days travel by rail within the Conference Zone between the SECC, the hotel district and the city centre and also allows 50% off rail fares throughout Scotland.
This year for the Fibromyalgia Awareness Day on the 12th May we encourage you to participate in a fun and creative art therapy activity together with us! Many thanks to our volunteer and an art therapist, Amanda Mckinlay, who inspired us to share this with you and to do our masks, too.
Amanda explains how this works: ‘’The ‘’two sided mask" idea really struck a chord with me with regards to living with fibromyalgia. The idea is that you decorate the mask with one side showing the face you portray to the world & the other showing how you really feel. This hit me as being perfect for fibro because often, to save trying to explain how you feel to someone who won't understand or because you don't know how to put it into words we just put on a happy mask & say "I'm fine" or on the other side of things often people say to us " you look well" when we don't feel it. I'd also seen quite a few mask themed posts on a few fibro themed social media pages & talked to some friends who agreed it'd be a good idea for an awareness project & that's why I contacted the charity.
The idea is simple:
1) either download a mask template from FMA UK website or the internet (www.freefunfings.com/masks/plainmasks has a choice of shapes & styles) or you can get plastic masks to decorate from either your local £1 shop or craft shop.
2) Decorate it any way you like. You can use pens, pencils, crayons, paints, stickers, fabric...anything & you can make it as glamorous & happy or sad, plain & sore looking as you want. It's up to you what face you want to show. PLEASE don't think it has to be a masterpiece... It's about having fun, getting in touch with your "inner child" & getting our fibro faces out there for the world to see! (you could even have fun & get together with your local support group or family & friends who want to show their support and make your masks together).
3) take a photo & upload it to Facebook, Twitter, Instagram etc.. before or on 12th May using #fibromask in your posts to get fibro trending all over social media. Put them on your own timelines & share them with FMA UK on Facebook (Fibromyalgia Action UK) or Twitter ( @fmauk ) - it gets awareness out there and let's other people with fibro know they're not facing it alone.
Premiere of ''Sonata for Cello'', a moving fiction film about fibromyalgia, London 14th April at 6 pm - only £5, book now!
UK’s Premiere of ‘’Sonata for Cello’’, film about fibromyalgia, at the London Independent Film Festival Opening Night Gala, Thursday 14th April at 6 pm
Sonata for Cello is a must for everyone who needs to understand fibromyalgia. It is a touching and professionally made film by people who have experience of fibromyalgia.
It is a fictional story of a world-renowned cellist, who in her midlife developed fibromyalgia. The condition made impossible for her to continue to play; it is a story of a daily struggle between the physical and emotional pain of not being able to do what she wants to do and a strong will to continue to play regardless of the pain. Playing the cello is for the cellist everything; a mission, a vocation, a passion, a sole purpose of her life. It is her life.
In the film we watch how fibromyalgia takes away everything she loves and cares about. We watch how it takes away her life and we admire her heroic struggle to take her life back and to win with the condition.
This film has captured in a very artistic and moving way the invisible struggle everyone living with fibromyalgia takes up every day. It is also a captivating story about love, passion and sacrifice.
Those living with fibromyalgia will identify with the main character and her struggles. Others, after watching this film, will have a better understanding by the end of the film of the impact fibromyalgia can have on people’s lives.
This is a great opportunity to raise awareness without making people sit through a documentary. FMA UK would encourage as many people as possible to go and see this film.
The film’s director, Anna’s Bofarull mother has fibromyalgia and the film’s producer, Marian Matachana also has fibromyalgia. It took them 5 years to raise funds and to develop the film, which is being screened in other countries and won a number of prestigious awards at film festivals in other countries.