Newsletter October 2005

World Arthritis Day Special

12th October 2005

What makes you feel good?

Hello and Welcome from the IOYR Board! We hope you are feeling well and are able to take part in some activities to celebrate World Arthritis Day 2005. This year's theme is "What makes you feel good?" You can read stories from individual members and from organisations in this newsletter.

Thank you to everyone who took the time to contact us to give feedback on the new website. It was all very positive and we hope any problems are sorted out.

Thank you also to member organisations that contacted us to say that they agree with the new constitution.

Lastly we would like to thank all the organisations that have signed up to come to the Contact Making Seminar in Estonia next year.

You may remember from the last newsletter that we told you about a Member's Meeting that would take place in Prague in February 2006. Unfortunately, we are no longer able to have this meeting in Prague. Instead a "Contact Making Seminar" will take place in Tallinn, Estonia on the same dates. We aim to have an Eastern European meeting in Prague at a later date. More news next time!

Please send us your articles for the next newsletter by 31st January 2006. You can send them to info@ioyr.org or fax them to 0044 141 562 1180

This article has been reproduced from "No Limits", the Arthritis Care magazine for young people. We are grateful for the permission of the editor to reprint it here.

Three years ago, 17-year-old Carly Ennis first picked up a guitar. She hasn't looked back since. Growing up with arthritis sometimes left Carly feeling at odds with the world, but music has helped her to voice her experiences: 'Even when my pain was at its worst I still had music,' she says. 'If I couldn't play my guitar because of my hands I could still sing and belt* out a note.' And belting out* those notes has given her a confidence and drive that's got her heading for a very bright future indeed.

Carly's love affair with music began when she was barely out of nappies. 'I remember knowing all the words to REM's It's the end of the world as we know it (and I feel fine) when I was just three or four,' she says, proudly. Her world changed when she moved to Sheffield aged nine, and her feelings of being different were compounded when she developed juvenile chronic arthritis two years later. This meant two years of reduced mobility: 'It was crutches and wheelchair territory,' she says.

As her condition improved, Carly discovered her calling for Karaoke. 'As my arthritis started to get better my mum decided that I should try to get out and about more, as I had not been able to get out of the house for about two years.' Her first taste of the limelight came as her rendition of a Dido song took the number one spot in a Karaoke competition in Portugal, despite the fact that she had been a rather hesitant last-minute entrant. 'It was great,' she remembers, 'belting out Alanis Morissette and Celine Dion.'

When she was 14, Carly discovered the guitar and within a year had written her first song and performed it on her school CD. 'I had been through a tough time with my arthritis and I felt a bit displaced in Sheffield,' Carly says. 'There is one song I wrote where I realised that everything was all right. I had come to terms with things - with arthritis and being in a different place - and realised that life is good. The song's called Finally Feel.'

Things began to take off for Carly about a year ago. She started working with a local musician doing backing vocals on his new CD and touring the pub circuit promoting it. followed by time playing gigs with friends around Sheffield.

Carly's big break came in a wine bar called Menzels, where she was invited to play at a singer/ songwriter open session. 'My mum dropped me off. I was thinking, "It's a bit posh",' she says. 'There were only about four people in the bar, but I got up and played Tracey Chapman and they immediately asked me to come back again that evening.' Carly has been playing her brand of music there regularly - which she's dubbed 'acousticy', and which is inspired by the likes of Tracey Chapman and Alanis Morissette - until recently, when her studies have taken more of a front seat.

Carly is currently tackling an impressive line up of AS Levels: English literature, early modern history, theatre studies, French and a Spanish GCSE - phew. She's set her sights on becoming a journalist, following a degree in French and English and a post-grad in journalism, 'I'm leaving my options as wide open as possible,' she says. And after recent work experience in France she's also got the travel bug: 'Maybe I'll be a foreign correspondent,' she dreams.

Carly's ambitions are high, and she does feel that she owes at least some of this self-confidence to music: 'Music has absolutely helped me handle things,' she says positively. 'I used to be up until one in the morning, which was my prolific song-writing time. I was in so much pain and there was no one around to hear me complain so I wrote songs. One is called Selfish - as I get annoyed that I feel pain and complain to other people about it.'

With a new breed of live musicians such as Katie Melua and Joss Stone wiping the floor with the pop acts in the charts, Carly's well placed for success as a singer. But, whatever she decides to do with her life in the end, she will always cherish her personal bond with music. 'Music will always be a part of me. If I have had a frustrating day I can always come back and play my guitar.'

*belt / *belting out these are English slang terms meaning singing at full voice!

Do you have a passion or interest that helps you cope with your arthritis / rheumatism?

On 10 September 2005, the weather in Pirita, a beautiful seashore district in Tallinn, Estonia, could not be better. Days before it had been raining all the time, but that day even the sun peeked a little from behind the clouds to greet about 300 people who had gathered to participate in the 5th walking day. The event was organised by the Estonian Rheumatism Association and Estonian Youth Rheumatism Association.

I also had a chance to take part in the event. The Tartu Rheumatism Association with their bus picked me up on their way to Tallinn and my lovely husband had agreed to spend some time with our lovely baby.

It was nice to see that the Walking Day had become a tradition - every year in September people having arthritis/rheumatism come together to go in for sports that is suitable for almost everybody - walking. It is not a competition. Everybody can choose a tempo that is suitable for him or her. The main aim is to have fun, spend some time outdoors in the open air and feel good.

On the walking day, I tried for the first time walking poles that are used for practising Nordic walking. At first I thought: Oh, it's so easy and there is nothing special in it! But heading already for the finish, we met the instructor on the track who showed us how we should actually walk. So at the very end of my walk I finally learned how to properly use my walking poles. It would be a good idea to listen to the instructor first and only then take up walking. After learning the right technique, it is OK to practise it wherever you go. It is not difficult at all, and it is really much fun! I have seen people of different ages using walking poles both in the city and in the countryside. It is good to see that Nordic walking is gaining popularity in Estonia.

We are delighted to bring you this news from Poland. It is great to hear from you and welcome a new IOYR contact person

The Polish Association of Young Patients with Chronic Arthritis was established in fall 1992 under the auspices of Poznan Division of Polish Rheumatology Association and friendly support of Poznan Municipal Government. The heart of the organisation is seated in Poznan but the whole Poland is within the scope of our activities.

Members of our organisation are young people aged between 16 and 35 years old who have such rheumatic diseases as juvenile rheumatoid arthritis, rheumatoid arthritis and Ankylosing Spondylitis.
The main aim of Polish organisation is to help young people with arthritis to start mature life.
First on our activities list is organising the members meetings. Every month we gather at the association seat and discuss extremely various topics. There is a great opportunity to ask questions and get some advice from invited guests like physicians, psychologists and the patients' rights consultant or just chat with interesting artists. The supportive group maintains the contact with all members who are not able to participate in the meetings because of their severe physical condition of rheumatism or distant dwelling-place.

In addition we get in touch with them by mail or phone. Apart the formal meetings we travel together to other interesting places, go to the cinema, theatre or meet at barbecue parties outside the city. The other area of our activity is maintaining the mobility of our stiff joints. Once a week all members have a chance to exercise under the professional physiotherapist eyes, a good friend of the organisation.

The Association has an honour of representing Poland in IOYR. Our members have been participated in all previous IYC's and tried to be as active as it was possible… appropriate to their English skillsJ! The article covering IYC in Switzerland was published in our monthly leaflet "Skrzypek" and "Zloty Srodek", a magazine of the Association of People with Rheumatism and their Friends.

The activities go beyond Poznan. Once a year we spend time together at the rehabilitation centre. In the past we used to visit Inowroclaw spa resort but 2 years ago we established a new collaboration with the Division of Poznan Rehabilitation Centre in Blociszewo. There is a clinic in a stunning 18-century palace surrounded by an old walking park, where the morning exercise took place. The rehabilitation program included physiotherapy as well as kinezitherapy, hydro-kinezitherapy and massage. This way of spending time not only improves the shape of our joints but also develops strong relationships between people and lets us take a break from daily problems.

I would like to mention that the General Assembly of Polish Organisation took place last March. Many of us, especially the former chairman were anxious about future of the organisation. We could not encourage enough volunteers to stand for the election to the Board. That reminded me that IOYR has been faced with similar problems during their last General Assembly. Fortunately, there is a happy ending of that story. The Polish Association has a new Board with Barbara Sloderbach as a chairman. Moreover Marcin Tasarek has been appointed as new person responsible for contact with IOYR. At this point I would like to wish him best of luck at his new duty!

Please send us news from your organisation so we can share it with other IOYR member organisations.

· raise public and professional awareness of the situation of young people with rheumatism and change attitudes.

· develop links between medical professionals and young people with rheumatism and increase understanding.

· stimulate intensive research of the experiences of young people with rheumatism.
· co-operate with other organisations with similar interests, as appropriate