International Organisation of Youth with Rheumatism

Hello and welcome to Newsletter number 20. We are delighted that Cyprus and Germany have supplied articles for this edition. We also bring you news of the General Assembly and your opportunity to stand to be a board member of IOYR. We ask you to consider this carefully and do your best to support IOYR. Sending you many good wishes – The IOYR Board

I am a young woman with AS (Ankylosing spondylitis). Last February I was at the Contact Making Seminar in Tallinn of Estonia. There I had the opportunity to meet young people between 16-31 years of age with rheumatism. There we had the chance to discuss and share our experiences from every day life with rheumatism, to communicate as young people with the same wonders and to see the different way that each one of us find, in order to have a good life with this special way of life.

After the discussions we had and after we shared our experiences, I realised that one of the best ways for us to feel better is to communicate and make friendships with people who have the same worries, problems, experiences and feelings as you have. These friends can help you and you can help them so all of us to have a better life.

This is the reason that all of us have to hug the IOYR in order to get the opportunity that it gives us to be close to each other and learn from each other. WE OWE THIS TO OURSELF!!!

In our days people having serious health problems is a common thing and each one has its own story. The most interesting stories are sometimes when the person’s health problem is just beginning.

My story begins three years ago when I found out about Lupus. I wasn’t feeling well. I had pains in all over my body, especially in the joins on my legs and fingers. I had some blood exams and when we got the results my doctor told me that she could not help me any more and that I should see a Rheumatologist. I was so lucky that my doctor had the knowledge so to point me to the right direction. But that period on my life I couldn’t really appreciate that. I was lost.

I was panicked and a voice in my head keep telling me that my life was finished before it even began and I was joking my self if I was thinking that I could live even close to a "normal" life, because this life with Lupus would have limitations in almost everything. And if you are around twenty, limits are the things you hate most! Limitations for how late you can stay awake at night, the distances you can walk, the hours that you can work in a day… and the worst of all you have to take your pills every day! If you don’t follow the rules, the punishment is pain!! Sounds barbarian but that’s the truth.

Two years later I felt that, this way of thinking was a literally deadlock and that I should reconsider some of my ideas…

Since then I keep a rule. I don’t consider having Lupus as a sickness. It is just a way to be different and having some more limits than other people. I consider myself "sick" only those days that I really need to stay in bed. That really works for me and I wanted to share it with you.

From 5 July we at the Cyprus League against rheumatism have organised the Group of Young with Rheumatism between the 16-35 years of age.

The goals of the group are:

• To inform issues that concern young people with rheumatism.
• To protect the rights of young people with rheumatism
• To share experiences
• To share news
• To support each other
• And last to organise different themes for information and entertainment

If you are young with rheumatism aged between 16-35 years old you can join in our company to continue in our special way of life.

You may remember from the last newsletter that Sweden will host the International Youth Congress (IYC) and General Assembly. IYC 2007 will take place from 18^th – 24^th July. As usual for IOYR, the General Assembly will take place during the IYC. The board would like to invite you to the 2007 General Assembly of IOYR. This will take place on Saturday 21^st July at 10am.

The General Assembly is where members discuss and decide the future plans of IOYR. Also members elect their new board who will carry out the tasks for the next 3 years. There are 7 available places on the IOYR board. Does your organisation want to be on the new Board? Is there a young person with rheumatism aged 18-35 years in your organisation who can be a representative and take the responsibility to attend meetings and fulfil the tasks given?

The 2007 General Assembly could be the most important ever for IOYR. As you know only 4 board members were elected in 2004. Since then it has been a struggle to carry out the tasks due to work and study commitments. Also the members of IOYR have not been as cooperative and supportive as we would have hoped. As a consequence when the board members stand down, most of them will not stand again (e.g. UK, Germany and Norway). Without more commitment from its members, 2007 may be the last year of IOYR. This would be very sad indeed. The future is up to you…

The board must receive suggestions for the Agenda for the General Assembly from IOYR members by 2^nd April.

The board will send the agenda for the General Assembly to member organisations.

The board must receive from members any ideas / suggestions for changing the IOYR constitution before 20^th April 2007.

The board must receive nominations from organisations willing to stand for election to the new board by this date. All representatives standing for election to the Board must be supported by their country's organisation and must be nominated by their organisation.

The board will send final GA paperwork and notify members if it will be necessary to hold a vote to elect board members.

mariannescobie13@hotmail.comor Fax: 0044 141 562 1180

If you wish to reply by post, please see the address given in the official GA Invitation letter from the IOYR Board.

In Germany, the honorary work of people with rheumatism, who are supported by full-time activists, is organised in the Bundesverband of Deutsche Rheumaliga e.V (Association of German Rheumaliga, DRL). These consist of 16 groups, one for each Region. There are groups of young people with rheumatism in almost all regions. Every two years, the DRL arranges a regional conference and a regional youth meeting, where young and older people with rheumatism may share experiences and get to know each other. In October 2006, the regional conference for the mother-organisation and youth organisation took place in Bonn – its main subject: "fitness programs – chances and limits". Moreover, both mother organisation and youth organisations had to elect new deputies.

Well, I am the result of this election: the new representative for youth. For me, it is either a further challenge in my long-standing, honorary work for the DRL or a logical consequence and the next step into future. I started as the youth representative for Hamburg in 1997, some years later, Schleswig-Holstein was added. Finally, I joined the local committee of the regional youth group. Every task supported me to gain experiences, new ideas and more prospects. And this helped and helped me in my everyday life and job to change the view on something and analyse it.

We asked ourselves if there are any kinds of sports which are suitable for people with rheumatism. The young ones answered: "Give us the chance and we can try it!"

There are a lot of possibilities and we should not exclude them because we have rheumatism. The Committee of young people with rheumatism has made an effort to present a variety of chances and it is necessary to encourage people to try new things. The topics and results of the biannual regional youth meeting and conference emphasises this every time: "Give us the chance to try it!"

"As soon as we learn to trust ourselves, we begin to live"…Goethe said. Did he think of people with rheumatism? May be he didn’t, but it suits us very well.

Again and again we push ourselves to different limits, which seem to be unachievable. These are set by our physical impairments, by lack of confidence or by background. Sport in general and Fun Sport especially challenges all these limits.

"Fun-Sport" challenges the attitude: "I’m not agile and powerful – I will never get it done. Everything that’s funny is unhealthy."

THAT’S WRONG! PURE AND SIMPLE! This was the theme of DRL’s regional youth meeting a few summers ago. Gliding, diving, canoeing etc. were offered. The groups in Hamburg and Schleswig-Holstein arranged weekend seminars for diving and canoeing in 2001 and 2002. We did not aim to be able to do everything right. The purpose was to see if we can do what we want in spite of having rheumatism. On the weekend’s canoeing activity we took care that in each canoe there were some "powerful" and "healthy" people. The diving was managed by a diving school, which is specialised for disabled people. For gliding, you need more money and confidence than you need fitness, flexibility and power.

One of these fun sports is presented in an article, which was published in Aktion Mensch’s magazine in 2002. It was an appeal to ourselves to break the limits intentionally and to trust in it. Then: "As soon as we learn to trust ourselves, we began to live".

The youth and mother organisation representatives and their deputies were gathered together in BUKO in October 2006, to get ideas for regional organisation’s work and to exchange information. We had dinner and met informally before being greeted formally. Afterwards all representatives created information posters about activities, thoughts and desires for their local group. In the evening we sat in front of the open fire and discussed our new experiences. On the next day, we started with a presentation by Mr. Fuchs, (a teacher in sports in the centre for rheumatism in Oberammergau, Germany) and experiences of young people with rheumatism who do various kinds of sports. They talked about sport as their purpose in life; they motivated everybody to try it. Other presentations were about fitness and its feature to improve life quality. After that, assorted groups had the chance to discuss other questions about sport and rheumatism. At the end, all results of their work for DRL were presented. The first working group examined children’s riding. The second one dealt with Pilates, a new trend. That was the theory. On Saturday evening, we joined a workshop, which educated us in oriental dances – exotic and challenging. Sunday was reserved for the official part of this week end. The candidates for regional youth representatives were presented and became elected. Gudrun Baseler is our new youth representative and myself, Tom Amende, her deputy. He is going to take the international work of DRL and alternate Astrid Küntzel.

 To conclude with some participant’s feelings:  "Sport and fitness are challenges, which strengthen ourselves."

"After 14 years with rheumatism, I am amazed, that there are a lot of chances to bring this disease and sport together."

"I am relieved that I do not have to ban my child everything because of his rheumatism. I believe that he will find his own limits."

 By Tom Amende

A last word from the IOYR Board

Remember this is YOUR newsletter so please send us your articles, ideas and photos to info@ioyr.org or by fax to 0044 141 562 1180