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This is the text from the first newsletter of IOYR
published in July 1996
Welcome to the first ever newsletter of the IOYR! We hope this is the
first of many. If you have any comments on this edition or suggestions
for future editions please send them to: Marianne Cunningham, c/o Young
Arthritis Care, 18, Stephenson Way, LONDON NW1 2HD. Great Britain
AT LAST, HERE WE ARE!
- After ten years of planning and dreaming IOYR is finally here.
In Berlin in December 1995 eleven different nations, all represented by
young people with arthritis,
met together to launch the International Organisation of Youth with Rheumatism
(IOYR). This was
the culmination of over ten years of planning and meetings.
The story starts in 1984 where the Youth Committee of the Dutch League
of Associations of
Patients with Rheumatic Disorders started to develop the idea of working
on an international level
with their sister organisations in Europe. Questionnaires were distributed
across the continent and
several meetings were held, which led to the first International Youth
Congress held in Holland in
1989. The aims were to make contact with young people with arthritis,
to exchange experience and
information, and to set up contact networks and self-help groups in those
countries where none
existed. This first IYC was such a success that a second was organised
in Coventry in 1992, hosted
by Young Arthritis Care.
At the 2nd IYC it became evident that one week every three years was not
sufficient to meet the
need for co-operation between countries and exchange of knowledge and
experience. So a working
party was elected, consisting of seven people, each from a different country.
Their task was to launch
an international organisation of youth with rheumatism.
Thus the 1995 meeting in Berlin marked the end of this working party and
the launch of the new
organisation. Following long discussions about constitution, registration
and membership, the IOYR
was finally born and the Board was elected. This consists of representatives
from seven countries:
Germany, Denmark, Holland, Norway, Lithuania, Czech Republic and the U.K.
Our task is to
implememnt the aims of IOYR (see back page)
That was the business side of the meeting, which was hard work but fruitful.
However, the weekend
wasn't all hard graft. It seems to be an international trait of young
people with arthritis that we know
how to both work hard and let our hair down! Following a tour of Berlin
one evening, over 30
people from eleven countries invaded a small bar in former east Berlin
for a lively evening. Despite
the language differences, friendships were forged very quickly, and the
weekend was over far too
soon.
The first board meeting has recently taken place in Bonn (May 1996) where
friendships were quickly
renewed and more hard work was accomplished. We were able to plan specific
projects to work on
in the coming year:
· final preparations for the 3rd IYC in Denmark in July this year;
· a fourth IYC is being planned for 1998 in Germany;
· an IOYR newsletter will be produced in the summer to coincide with the
IYC;
· a twinning scheme is being established where one country
with an established organisation for
young people with arthritis helps a country with an emerging organisation.
Once again, we were able to enjoy ourselves in Bonn as well as working hard.
We had a very
cosmopolitan time: an exhibition about Tibet, a concert of Edith Piaff songs
(in French) and drinks in
a Turkish bar - all in the middle of Germany! IOYR is truly international!
The new board
NORWAY: Georg Hodnefjell
Hi, My name is Georg and I'm 24 years old. I have had rheumatism since I
was 13 when child
arthritis was diagnosed. At 18 I was then diagnosed with Ankylosing Spondylitis.
This is my official
diagnosis. When I came home from hospital when I was 13, my Mum had already
got me into the
national organisation. I didn't like the idea then, but now I'm glad. At
15 I became a leader of the
Youth Group (age 16-25) for my local area. Because of this I became a member
of the Board of the
Mother organisation. The Youth Group is called BURG . Now I am the leader
of the local group of
BURG (West Region of Norway).
In 1995 I became a member of the National Group of BURG. The first thing
they gave me to do was
to take BURG to the IOYR in Berlin.
I work in Norwegian's largest computer business. I work in the office working
with Logistics. When
my health is OK I am a Service Technician installing and repairing P.C.'s,
printers etc.
My main hobby is BURG! All my friends are involved in it. I also like sport
and have a season ticket
for the Vikings, which is the local football team. I also have a girlfriend
to take care of!
HOLLAND: Lucinda Blauw
You can call me Lucinda. I'm 25 years old and have had rheumatism for 25
years: it's JCA and
they've not changed the diagnosis!
I represent the Youth Committee of the Dutch League of Associations of Patients
with Rheumatic
Disorders. When I was 16 years old my parents looked for an organisation
where I could make
contact with other young people. The only local one was for people who were
over 50 years old. My
parents then read about the Youth weekends that are organised by the Youth
Committee twice a
year, so they just took me to one and left me there!
In March 1992 I was asked to join the Board of the Youth Committee. For
the first six months I just
looked around and helped organise the Youth Weekends. I then became treasurer
for one year. Then
I became the Chairman of the Youth Committee. they were looking around for
another rep. to
replace the former one because he was too old. Everyone thought that I would
be the best one so I
said "I'll try it!".
At the moment I am still studying. I already have my diploma in Economics
and Administration. As
part of that diploma you could choose several directions and I chose law.
After completing that I
decided to study Law and if all goes well I'll have my title in three years
time. I still live with my
parents but I have my own apartment attached to their house. I have my own
room and bathroom
and entrance door. It's a nice neighbourhood where we live with lots of
children so I baby-sit
sometimes. I enjoy creative work with paper - painting, origami, embossing
.... I also enjoy reading
and watching movies.
DENMARK: Dorte Rønsler
I'm also 25 and I've had rheumatism since I was 6 months old (JCA). It was
first diagnosed when I
was 10 by a dentist, but looking back my parents and the doctors could see
that I'd had it since I was
a baby. My parents became members of the Organisation for Parents of children
with rheumatism,
which is an independent section of the Mother Organisation.
At a weekend for parents, I became a member of the youth Organisation (FNUG).
At the age of
about 17 I became a board member. I then had a one year break to finish
college before becoming
secretary of the board. Then one and a half years ago I was made Chairman
of the Board. FNUG is
currently organising the International Youth Congress 1996 in Kalundburg,
Denmark.
I work as a secretary in the Mayor's Office in the town where
I live. I use a lot of time working with
FNUG. When I have free time I like to swim and to train at a workout centre.
LITHUANIA: Dalia Braziulité
I'm Dalia and I am 29 years old.
The first time that I heard about organisations for Young People with arthritis
was in 1991 when a
colleague asked me if I wanted to spend Easter in England, where she told
me they had a strong
organisation for Young People with Arthritis. In Lithuania there was only
one Arthritis club at that
time and that was mainly for old people. I travelled to Coventry for the
2nd IYC with a friend who is
a doctor and also has arthritis. Before that conference I didn't think that
I could talk about my life
with arthritis to other people. That was a deep time for me as I met with
my illness for the very first
time: a type of osteoarthritis that I've had since early childhood, which
became much worse 5 years
ago.
At the Congress I was elected onto the Working Party for the IOYR. At that
time I wasn't very sure
about talking in English, but it felt right to join the Working Party.
So it was that I was involved internationally before anything happened on
a local level.
I have organised an "Artritis Club" (18-35 years old) in Kaunas,
of which I am the President. It was
officially registered in 1993 and is the only one in Lithuania. Most members
live in Kaunas city. We
have about 7-8 young people who are enthusiastic and active. We meet once
a fortnight and don't
have any complex structure.
I used to work as a Psychologist but now I don't work officially because
of my arthritis. However,
I'm very involved in meditation and teach this in workshops and seminars.
I'm also a Reiki healer.
For me my hobbies and my profession have become the same! I'm quite unpredictable
and crazy. I
love all forms of spontaneous creativity: painting, dance, music, arts...
I also love animals very much
and have a crazy dachshund!
GERMANY: Michael Bernady
I'm 28 years old. I've had rheumatism (JCA) since I was 10 years old. I've
had a lot of luck because I
was sent to a special hospital in Garmisch Parten Kirchen straight away
so they treated me very well
and helped me. (My Mum has rheumatism too.) My first contact with the National
Organisation also
came through international work. A friend contacted me, looking for participants
for the IYC in
Coventry. Fortunately I spoke English so I was able to go. This gave me
a push to get involved
nationally.
I am now vice-speaker on the Youth Committee (BAK) which is made up of seven
people. I'm also
responsible for IOYR work. Others on the Committee are responsible for Public
Relations, Finance ,
Seminars, workshops and especially national meetings for youth with Rheumatism
which will take
place in 1997. It is expected that about 60 people will attend these.
I live with my girlfriend in Trier. I moved there from the country about
7 years ago, and I like living
in the city. All my friends are there. At the moment I am finishing my studies
in Architecture.
I don't have any special hobbies, only traditional ones like maybe a bit
of cycling, visiting friends,
going out, reading, listening to music.
U.K.: Catherine Gibb
I'm 28 as well and while I was an undergraduate student I was diagnosed
with Ankylosing
Spondylitis at the age of 20. It wasn't until five years later, that I first
heard about Young Arthritis
Care. I'd been going every week to a Clinic at the local hospital for a
few weeks and had noticed one
other young person there amidst a sea of grey hair, but had not managed
to introduce myself to her.
We finally got talking one day and we have been friends ever since. She
told me about Young
Arthritis Care and I became a member and started attending the local group.
I'm not the sort of
person to sit back and let everyone else do the work so when
I was asked if I wanted to be
nominated for the National Committee I jumped at the chance. Shortly after
this I also became the
Local Contact for the Newcastle area. In October 1995, the National Committee
needed to elect a
new representative to the International Organisation of Youth with Rheumatism.
To my surprise and
delight I was elected. I will also become a member of the Council of our
mother organisation
(Arthritis Care) in July 1996.
I am a qualified Speech and Language Therapist and worked for two years
before going back to
University to research for a Ph.D. which I am still working on. A lot of
my free time is taken up with
Young Arthritis Care work, but I also sing in a band at my church, and enjoy
reading, sewing,
cooking, music and meeting people.
CZECH REPUBLIC: Jindra Dvoráková
My name is Jindra and I am 26 years old. At the age of three I was diagnosed
with arthritis. I believe
this has made me much more determined especially when pursuing my career.
I represent the Czech Reuma-Liga on the IOYR. I have been the vice-chair
of this organisation since
1992. I have now started reconsidering my role in the organisation as well
as the involvement of
young people in it.
I work as a Conference Interpreter which keeps me very busy.
As for my free time - what do you mean?! This is a completely new concept
for me! I have recently
got married and my husband is trying to make helpful suggestions - he suggests
that I take up
cooking!
The International Organisation of Youth with Rheumatism
(IOYR) is an association
of national organisations of young people (aged 18-35) with rheumatism,
initially
working in Europe. English is the official language of IOYR.
The Aims of IOYR
The overall aim of IOYR is to improve the situation of youth with rheumatism
(aged 18-35)
through information exchange, self-help and policy influence.
Initially the IOYR will focus on countries in Europe but will work in the
longer term on a truly world-
wide basis.
The main aims of IOYR are:
· To exchange information and experiences and to learn from and help each
other.
· To encourage the development of self-help in each of the countries.
· To empower young people with rheumatism and enable us to get our voices
heard.
· To raise public and professional awareness of the situation of young people
with rheumatism
and change attitudes.
· To exert policy influence, both internationally and nationally.
· To develop links between medical professionals and young people with rheumatism
and
increase understanding.
· To encourage more research into the experiences of young people with rheumatism.
The IOYR is a legally constituted organisation, registered in Germany. All
activities are led by
young people with rheumatism. Membership is open to one national organisation
of young people
with rheumatism from each country.
¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯
National Organisations of IOYR Board (June 1998).
GERMANY (Chair of IOYR)
LITHUANIA (Dalia Braziulyté)
(Michael Bernardy)
Kaunas Club ,,Artritas"
BAK- Deutsche Rheuma Liga Bundesverband
Varpo 21-1
e.V.
KAUNAS 3031
Maximilianstrasse 14
Tel: +3707 79 1924
53111 BONN
Fax: +3707 79 9786
Tel: +49 228 76 60 60
Fax: +49 228 76 60 620
DENMARK (Dorte Rønsler)
NETHERLANDS (Lucinda Blauw)
FNUG
Youth Committee
Ellemarksvej 47, Byg. 6
Reumapatienbond
8000 Århus
Postbus 1370
Tel: +45 8611 8521
3800 BJ AMERSFOORT
Fax: +45 8611 7398
Tel: +31 33 461 6364
Fax: +31 33 465 1200
GREAT BRITAIN (Catherine Gibb)
CZECH REPUBLIC (Jindra Dvoráková)
Young Arthritis Care,
Czech Reuma-Liga
18, Stephenson Way,
(Youth Section)
LONDON NW1 2HD
c/o Jindra Dvoráková
Tel: +44 171 916 1500
Samova 24,
Fax: +44 171 916 1505
10 100 PRAHA 10
Tel: +4202 717 46 876
NORWAY (Georg Hodnefjell)
BURG - Norge
Prof. Dahlsgt. 32
0260 OSLO
Tel: +47 2255 7216
Fax: +47 2243 1251
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