- Are you a parent, carer, family member supporting a child or young person (up to age 25) with a disability or additional need?
- Are you a child or young adult with a disability or additional need?
From Monday 12 September Transport for London are trialling a ‘please offer me a seat’ badge and card. The badge and card are for customers who find it difficult to stand when using public transport, and are particularly targeted at those with hidden disabilities, conditions and illnesses.
Peter Fletcher told us : "We want to recruit 1,000 people for the trial, to help us understand if the badge or card can help people access a seat, as well as assess the reactions of other customers. We would like your assistance in helping us find participants and to spread the message about the trial.
Simon Davies, Chris Clifford-Hirst, Steve Rhodes, Wayne Shaw and Chris Stiendorff completed the national 3 peaks challenge in 23 hours and 31 minutes. That's the highest peaks of Scotland, England and Wales all achieved in less than 24 hours! They raised £1,000 and are still raising fund: to support their efforts, visit Simon’s JustGiving page: https://www.justgiving.com/fundraising/Simon-Davis8
Simon told us: ‘’It was a painful undertaking but my wife Kassy who sufferers with fibro is in pain 80% of the time so 24hrs seemed small in comparison. I hope we have raised awareness along the way along with rising funds. I would like to say a special thank you to Colin Rhodes, the Managing Director of Castle Fire Ltd for not only providing the support vehicle and the fuel but for giving up his own time and being a fantastic driver’’.
We would like to thank all 6 friends too!
Katie Love has run the South Coast Challenge 100K (60 miles) as her auntie lives with fibromyalgia. It was Katie’s first such a great challenge and she has exceeded her own expectations: she has won in the woman’s category and came second in the overall run. We congratulate and say a big thank you to Katie!
Katie shared with us the experience: ‘’Great news is that I finished and not only that I ended up coming 1st in the women's category and 2nd overall in the two-day challenge!!! Don’t ask me how, I’m just as surprised as you are but I can honestly say what an experience!!! It started with an extremely nerve racking 7am start at Princes Park in Eastbourne with the beautiful weather getting hotter and hotter by the minute. Over the Seven Sisters towards Alfriston, Southease and then onto Hove were I would finish day 1. It was a toughie and would be a milestone by running past my furthest distance of 24 miles. I completed the sweat bucket, unrelenting muggy day 1 of 33 miles at 2.30pm. Surprisingly my body was ok (touching every bit of wood I could find), however the test would be later on that day.
Day 2 started very early at 6am from Hove. I was feeling extremely sore and wasn’t feeling 100%.With my mind all over the place on how the day was going to plan out my confidence lacked, however I took a deep breath and focused on the day ahead. I knew I wanted to finish and as the saying goes "Run if I can, Walk if I must, Crawl if I have to, but never give up.
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?