Who are we and what do we do?

In 1994 the idea of supporting patients and explaining vasculitis tp public at large came true by founding the VPS, the Vasculitis Support Group, in Bad Bramstedt. Vasculitis had still been a widely unknown autoimmune disease.

To this very day the trigger for the immune system of our body to attack the patient's own blood-vessels instead of fighting "enemies" is unknown. Vessels get inflamed and, since they are located in all our organs, every single organ can be afflicted. One can easiliy imagine that due to the manifold forms of vasculitis a docotr who is comparativley inexperienced as far as vasculitis is concerned will have immense difficulties in presenting a correct diagnosis. Consequently many patients suffer from a long Odyssey until they come across the right specialist. Vasculitis can still be fatal if not diagnosed correctly.

Some patients who are being treated or were treated at Bad Bramstedt Clinic have founded a working committee which cooperates with "Deutsche Rheuma-Liga Schleswig-Holstein" and medical specialists from Bad Bramstedt Clinic.

The assignment of the Working Committee has been and will be to give the necessary support to patients and their relatives to enable them to cope with the serious diagnosis. Exchange among affected people, for example in regionally established groups, is tremendously important, because a vasculitis-patient will usually be the only one among his family or friends, among his doctor's patients and in many cases even in his hospital.

The "Working Committee Vasculitis" of "Deutsche Rheuma-Liga Schleswig-Holstein" dedicates its energy to various fields of activities which supposedly help patients and caregivers: Every autumn the annual "Vaskulitis-Newsletter" is being published, the leaflet "Vaskulitis" contains information, the journal "mobil" of "Deutsche Rheuma-Liga" publishes news about VPS and every autumn we hold the Nationwide Informatory Congress at which specialists inform participants in lectures and individual talks on special problems and new findings of medical research.

The working committee Vaskulitis promotes the establishing of new regional support-groups all over Germany and to make them known. Thus patients who have not yet had any contact to a VPS group can get a chance of contacting hitherto unknown sources of help nad/or information. Of course, members try to get in touch with concerned ones in Germany and other European countries. Due to modern ways of communication there are also connections to support groups in the United States. Contacts with other support groups and federations is not just an end in itself but can be a great help in the fulfilment of the VPS's aims.

We would like to introduce ourselves:

The production of our annual "Newsletter", which is propably well known among readers, requires special attention and a lot of creativity. We thankfully profit by the good connections of the Landesverband Schleswig-Holstein. It is not possible to edit such a journal offhand, one needs quite some knowledge. It is very helpful to have the necessary connections at ones disposal. We depend to a great extent on aid and assistance from patients and caregivers and are happy about any hint or suggestion however small it may appear.

It goes without saying that all the members contribute their energy and knowledge for this project on an honorary basis.

back