VIDEO – Fibro Fundamentals with FMA UK
Fibromyalgia potentially affects up to 4.7% of the European population and is a complex condition which is still poorly medically understood. It causes widespread pain and fatigue and can be disabling. Fibromyalgia has a worldwide presence affecting nearly 1 in 20 people globally. In the United States, nearly 2–10% of the general population of all ages are affected by this condition.
In this presentation the Chair of the Charity Fibromyalgia Action UK Des Quinn talks about the charity, the fundamentals of fibromyalgia and how important raising awareness of the condition is, and how volunteers are vital for the Charity. The event concludes with a Question and Answer session.
Video of the event:
The FMA UK was set up in 1992 and its mission statement is:
“To improve the lives of people with fibromyalgia by increasing awareness of the condition throughout the UK and elsewhere, and improve the awareness of, and access to treatments for fibromyalgia.”
It is run by volunteers, many of who have Fibromyalgia and this includes the Chair Des Quinn.
Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used the most. The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.
Des Quinn – Chair FMA UK
“As chair of Fibromyalgia Action UK, I am responsible for ensuring that we set long term goals while ensuring that the day-to-day operations of the charity keep getting done. I became a trustee in August 2008 after a short time of helping as an advisor to the board with the website and IT matters. In this time, I have concentrated on promoting communication and using any methods available to increase awareness of fibromyalgia.
Personally, I run a small IT company that helps businesses with their technical requirements from websites to networking their computers. I also have the challenge of dealing with my own fibro and try my best to achieve the best work life balance that I can. With my partner Fiona, I have a lovely son Lewis who often drives me to distraction.
One of the positives that I have had from being involved with FMA UK is the opportunity to be there when people meet at a support group or get that first bit of information that changes their life when they get that affirmation moment of not being alone and adrift with this chronic condition. We have had much more awareness in the time I have been involved but there is still much more work to be done.
What does a chair do in a week or a month? Well in our charity it can be reaching out to band with the number one album, finding out about agents, reviewing possible fibro guidelines, training materials for the DWP, participating in partner meetings with the likes of ARMA and speaking to prospective volunteers. Its varied and fun but challenging and draining at times. Never enough time, not enough people and too many things to do. But, now at this moment we have many opportunities to progress which for me is a success.”
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