In this edition of the newsletter we bring you the first part of a book written by Nele Caeyers a young woman who has Lupus. The book tells her story about her life living with Lupus. She has kindly given us permission to reprint her book in the IOYR newsletters. So in each edition throughout 2006, we will bring you the next part of her story.  

We also bring you information about the European Union’s Youth Programme and about Richter, the organisation who led the Contact Making Seminar.

We hope you will find this newsletter interesting and informative. Please remember that we always look forward to receiving your articles, so please take some time to write about you organisation or yourself and your life with arthritis / rheumatism.

To begin this process we agreed at the Contact Making Seminar (CMS) that each newsletter will feature an organisation – so remember we can only do this if you send your information to us! This time we tell you about the Eular 2006 Congress.

During Thursday afternoon the 23 of February there were 26 people from 11 different countries meeting up at the small airport in Tallinn. We headed for the Peoleo Hotel just outside the city by bus and had a lovely dinner when we arrived. After dinner there was a presentation by all members about their country, organisation and some future plans.

The purpose of the Seminar was partly for young people with rheumatism, IOYR members or others, to meet, but also to get information about the European Youth Program by the two experts, Peter and Remco, from the Dutch organization Richter! The first two days were stuffed with great important information about how to make an international exchange using the EU Youth Program. We also went through all the "Why, How, When, Where and What" is important to think about. On Friday evening we played a game that was brought to us from Holland. The game included presents from the 11 countries that wandered from one person to the next, which made some people end up with many and others with none.

Saturday morning we all woke up and it was Remco’s birthday. There were some celebrations but we had no time to spare. Moving on to the last bit of the Seminar. Some girls from IOYR had managed to squeeze in a meeting before lunch, and we discussed how to improve our work for young people with rheumatism and their organisations in the world. After lunch on Saturday we all took the bus into the city, where we had free time going on sight-seeing, shopping, reading, resting our legs before we at 7 o’clock met up for dinner at the well-known Pepper Sack restaurant. They served great food and offered us to watch a show where two Estonian young men practised their stage-fighting in the stairway. Suddenly it was time for an Estonian woman to approach our table - belly-dancing! Needless to say that it was a night to remember!

On Sunday there was not much more to the day than to pack our bags and head in for the airport. There were quite a few long goodbyes, since some flights did not depart until late afternoon. After almost four days in the beautiful Estonia with great, friendly people, great seminar, too much meat to eat, sight-seeing, birthday celebration, and games I think this can say from all of us: THANK YOU ESTONIA! By Anna Ageberg from Sweden

Richter is a Dutch non-profit, apolitical and independent organisation located in the city of Den Helder and founded in February 2000. Richter was established by a group of highly motivated individuals with personal experiences and strong academic background in the field of voluntary sector, community development, public administration, business and international relations.

We organise around 10 cultural events throughout Europe each year. Some of them have the financial support of the participating Youth groups. Our main aim in organising these events is to let young people get acquainted with peer groups from other countries in Europe. In our experience; the best way to get to know each other and each others culture is via workshops such as theatre, drama, arts and video. In the past 10 years we have built up experience with almost all the 31 European countries that participate in the Youth programme.

We are participating also in the EVS program of the program Youth (action 2). We are a "hosting and sending" organisation in our region and yearly host 6 European volunteers who are staying in a so called Eurohouse. We believe in living together and sharing all kinds of different (cultural) emotions- the Euro house is a comfort and trustful step before going into maturity.

Besides these regular activities we are involved as an active and passive partner in different European networks. One of them is to establish a "European network of youth information point and cultural activities to activate youngsters". We are also a serious partner when it comes to organising training events. Our training involves different characters and themes. In the last 5 years we have been active as trainers in Moldova, Russia, Wales, Scotland, Azerbaijan, Belarus, Italy and recently in Estonia.

I truly hope that the information has giving you a positive impact and that you have a better view of the European possibilities and about Richter.

Friendly greetings

Pete Keijzer

Have you been involved in Partnership Working with other Youth Organisations?

Please write and tell us your experiences to

Five years ago my family was confronted with all kinds of bad luck at the same time. My father and father-in-law got cancer, my brother-in-law got killed in an accident in Nigeria, Africa, and I got seriously ill too. To cope with all this, I started writing down my experiences. I wanted to find peace with the whole situation, it all happened so fast. Later my story seemed interesting enough to be published in a book.

I was twenty-two years old when I first heard I had lupus. I just graduated from college, was teaching Catholic Religion, was newly wed and was supposed to be full of energy. This was not the case. I was always tired and my joints hurt a lot ands were stiff all the time. The rheumatologist diagnosed my problems as lupus and sent me to hospital right away. A lot of tests were done and the doctors came to the conclusion that my kidneys were in a very bad condition. I started a severe therapy with corticosteroids which, thankfully, succeeded. The enormous fatigue still controls my life; the therapy cannot do anything about that.

After a year, the lupus had stabilised, and under strict supervision I was allowed to get pregnant. And that happened right away. But I had to endure eight really tough months. I landed up in hospital several times because of troubles with my liver, diabetes, etc…

Jorien, our daughter, was born with a caesarean at the foetal age of thirty-six weeks. She was healthy and full-grown. The first weeks with the baby went really well. I figured out how to take care of a baby with my handicap and got a lot of support of family and friends. About six months later, the lupus got back again, causing a lot of damage on its way.

Hospitals, several treatments … it all started again. It took quite some time and research but after a year and a half I was stabilised again. My husband and I chose to have another child. Of course this was not without any risks, but we were well informed. Tisse, our son, was also born with a caesarean, at the age of thirty-six weeks. And he is healthy and vivid too.

Nowadays I am doing quite well. The lupus is under control, but can pop up any time. That is why regular blood controls are really necessary. The fatigue has become a part of my life. I live a bit more slowly … but more intensely…

Besides my story, I have written down the experiences of four other women, because every patient is different. It makes the story only more recognisable. In this book I have tried to express my deepest feelings throughout the whole process. I considered it very important that other readers and especially other patients recognised these feelings, as if the book was telling their story. A great deal of attention also goes to the medical aspects of lupus, but it is written in a simple language. The difficult terms doctors use, have been avoided or explained. It makes this book more readable and accessible to all people. Doctor M. Walravens, a well-known rheumatologist and expert in systemic diseases, has checked and corrected the medical information. He even found the time to write the foreword, for which I am very grateful.

At the end of the book one can find explanatory notes and a short summary of other connective tissue diseases such as Sjögren syndrome, vasculitis, etc. A link is also made to different patient groups. It completes this book, which gives an emotional story and medical background about an unknown, but spreading disease.

The Eular congress 2006 will be held in the characteristic, lovely city of Amsterdam, the Netherlands, June 21 – June 24. Maarten de Wit, Vice-president of the Eular Social Leagues (the umbrella organisation of European arthritis patient organisations under the roof of Eular) is very excited about the upcoming congress. Not only because he lives in this year’s hosting country but also because of his close involvement in the programme. Maarten: "One of our main priorities is to develop models of user-led organisations. Since patients have first hand experience with living with arthritis, they are the most competent advocates in their own interests". Solidarity with countries with new or less developed patient organisations is a strong personal motivation for me to work on a European level. Therefore I think one of the most important aims of the Eular congress is to share our experiences and best practices with other leagues and to stimulate the transfer of knowledge."

Health economics will be the main topic at the Social Leagues session on Wednesday 21 June. As a follow up to the successful APOM conference in November 2005 in Cyprus (Arthritis Patients on the Move), several speakers will focus again on the use of health economic arguments in their campaigns for early diagnosis, better access to treatments and improved quality of health services.

On Thursday 22 June, Neil Betteridge, Professor Josef Smolen and Robert Johnstone will highlight different aspects of the annual AAA (Alliance Against Arthritis) campaign. Maarten: "For future lobby activities on a European level it is important that the cooperation between all stakeholders is strengthened. Last year we did a tremendous job in raising awareness of the impact of arthritis within the European Parliament and our success has proven that people with rheumatism are well equipped to get their voice successfully heard. Topics that will be discussed are the 7^th EU Research Framework Programme, the European disability agenda and World Arthritis Day."

On the same day there will also be a very interesting session on fatigue, a symptom we are all familiar with but which is often neglected in the conversation with doctors.

On Friday topics are discussed on "Relations and sexuality" and in the afternoon on "Goal setting and communication". Do doctors have the same treatment goals as the patients? The answer is no, but how do we overcome this dilemma?

Saturday we will continue with an abstracts session where several representatives of our Social Leagues will introduce new and innovative projects on patient advocacy in their own country.

Every three years the international organisation PRES combines its own programme with the Eular congress. That means that also this year there will be a lot of sessions organised around themes that are of great interest for people with Juvenile Arthritis. Anyone interested in the details about this programme will find more information on the EULAR website www.eular.org.

Thank you to the Estonian Organisation and to Richter for organising a fantastic Contact Making Seminar. Of course we thank the participants who traveled to Tallinn to make the CMS a huge success.

Biggest thanks go to you, the members for your continuing support for the work of IOYR and your organisations.