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Austrian Morbus Crohn-Colitis Ulcerosa federation


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History of the origin of OMCCV

For many people living with Inflammatory Bowel Diseases today, it is hard to imagine a life without The ÖMCCV. One of the founders, Elisabeth Fiedler, looks back to the beginnings of this initiative:

A longer stay at the Hospital:

In 1981 another long stay in a clinic became necessary. Although at that time I was in a bad way, I have fond memories of it as it was the first time in eleven years with Crohn’s disease that I met other patients who had experienced the same problems as me.
After this stay in the clinic we IBD-patients met up together with our doctors several times. We learned that it is much easier to speak within a group about fears, problems and difficulties. Because of these conversations our appreciation for the doctors and – I think – also their respect for us changed in a positive way.

Personally I felt lucky to have been looked after so well, both medically and by my own family and friends, but still I felt that something was missing. The space between the poles of ‘diseased’ and ‘healthy’ seemed not to be provided.

The doctors of the first University Centre for Gastroenterology and Hepatology, Vienna strongly recommended the foundation of a self-help group, and subsequently many discussions about the importance of the formation of a union for people with IBD were held.

The first steps were not easy:

Finally, a small group of us bravely came together to bring this self-help group into being, however we soon came to realise the enormity of the task before us. Before we could even send out our first item to inform IBD-patients of our existence and to ask for their assistance, we would require a public identity.

After deciding fairly quickly on our name, our attention turned to the development of our logo. The final design (which still represents us today) shows the intestines, with the black and white contrasts symbolising the positive or negative outcomes for patients depending on physical and emotional support and wellbeing.

Now we turned our attention to finding an address. If you have ever looked for an apartment in Vienna, you will know how difficult it can be. And of course, this process is made even more challenging when you are a group who have no money. However, we were lucky enough to be invited by the ‘Women’s self-help after cancer group’ to use a community space that they were currently sharing with the deaf association. We were allowed to use the hall for our monthly meetings, whilst the members of the deaf association sold refreshments. Since then we have moved on from this space, and now have our own office in the Martha-Frühwirt-Centre on ‘Oberen Augartenstraße’, which we have now been at for many years.

Once all of the above was sorted, we were finally set to send out our first correspondence. When sending out our first paper, we were determined to get across the message that being a part of the association didn’t mean being sick forever, and that through their engagement with us, sufferers could have the opportunity to live a happy, more constructive life.

Our first Meeting:

By October of 1984 we had finally got to the stage where our formation meeting could take place. This first meeting saw about 60 interested people take part, all of whom already knew the impact that IBDs have on an individual’s daily life. Many of them did not only join to get help for themselves, but also to help others.

After the formation-meeting there were many subsequent working-meetings, after all, many new projects had to be started. A newsletter was created, posters were printed, experts were asked to speak at our monthly meetings and to give some free advice to our members, and medics were requested to join the medical advisory board.

We then began founding branch offices. However, it was not easy to find at least two members of the states who could do the necessary work. At the moment we are in the lucky situation where all of our offices are running smoothly thanks to the hard work of the staff there. Lastly we installed a telephone service which allows callers to connect to one of our members who has been personally affected by the illness, and is available to give advice & information.

To live as a human being of full value

Since our founding, understanding of Crohn’s disease and ulcerative Colitis has increased. Now there are many gastroenterological centres – not only in Vienna but also in every district across Austria – which have introduced IBD-outpatient’ departments. Health-insurers have been informed of the unique situation of IBD patients - in regards to sick leave and medicine permissions – and I must point out that all of our health insurances aid us without any problems, mindful of the seriousness of our disease. Finally, IBD-patients have even been invited to speak at gastroenterological congresses.

Aims of the Self-help group

The self-help groups aim to reduce isolation, loneliness and hopelessness, and bring people together who understand IBD issues. They should act as a place of refuge, and help to build new friendships and relationships, between not only IBD sufferers but also healthy individuals. Finally, we want people to find places of understanding, and a readiness to help when a person is in need. We understand that all of this will take time, but through our work we aim to make it a reality.
 
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