Avoidong the wrong paths - is it possible?
by Roland Peter, Kirchheim b. München
Foundation of a support-group near Munich
Despite all the progress in medicine there is still, to this very day, the problem of diagnosing rare disaeses at an early stage. Without a serious of lucky coincidences finding the right specialist can be a long and distressing process.
In my case - I am 49 years old and live in the Munich area - the basic illness started years ago. I was very often suffering from pains in the limbs and just didn't feel well. Examinations of the blood were always inconclusive regarding any severe illness. Even a sudden deafness six years ago was regarded as a job-induced symptom of stress. I was advised to slow down, reduce stress and to refrain from drinking any alcohol because all these factors were supposed to be the reason for my not feeling well.
Even being a teetotaller and having a lot of rest didn't improve my situation. In consequence my doctor decided that I was suffering from mental problems and he advised psychotherapy. The sessions helped me coping with my overall situation but, of course, didn't change my basic illness.
The situation worsened two years ago. I had sever difficulties getting up in the morning, and when driving I had to put in several rest-stops, because sitting for a long time paralized me. The orthopaedic doctor suspected a problem with my spine due to my overweight. a clinic specialized in orthopaedics diagnosed sudden pains in my shoulder as bursitis. When on top of that my knees got swollen and I couldn't walk anymore due to severe pain I heard the presumption "rheumatism". None of the follwing blood tests semd to conffirm this suspicion but to be on the safe side I was prescribed Resochin and Cortison.
When shortly afterwards one of my fingers turned black my docotr reluctantly suspected an autoimmune-disease. A rheumatologist suspected a form of vasculitis, an illness I had never heard of before. I was sent to a hospital in which she had treated other cases of vasculitis before. The diagnosis "vasculitis" was confirmed shortly afterwards. After further examinations doctors came to the conclusion that I was suffering from "Wegeners' Granulomatosis". At that time I had no idea about the consequences of the diagnosis. In fact, I was just glad that they had found anything at all because in the meantime I had started accepting the idea that my symptoms were purely imagined.
I was treated with Cortison and Cyclophosphamide. The physicians were amazed, since they had never seen a case of Wegeners' like mine before: neither my lungs nor my nose-area were involved which had probably been a hinderance for a earlier correct diagnosis were only my fingers and my kidneys had been affected.
When I was back home after the first treatment I began searching the internet for further information. I noticed some articles in English, Bad Bramstedt Clinic and "VPS" (Working Committee Vasculitis). For the first time I realized that my illness was not quite as rare as I had previously thought. Even more important was the announcement that the 6th Vasculitis Congress would take place on October 10th in Bad Bramstedt. Although I didn't really know what to expect and had not heard of Bad Bramstedt Clinic before I decided to attend the conference, joined by my wife. In the meantime I had contacted the VPS via telephone and was eagerly waiting to meet these people who were so dedicated to the matter and ready to help others.
I had been treated as a unique case. During the conference I noticed that the number of concerned ones was much higher than I had expected. I was amazed at how openly problems were discussed and how much support and help was being offered. And something else happened: Under the influence of this conference with its many talks with the members of VPS I decided to found a support-group in Munich as well. Deeply imressed by everything I had heard and seen I returned to Munich. I had the strong whish to realize my idea of a support-group but had as yet no concept of how to do it.
When I met an assistent medical director of Munich's Bogenhausen Clinic who had held a vasculitis-seminar in Munich this changed immediately. The doctor was still utterly disappointed because of the little attention his seminar had got. It had not been promoted publicly. They had not even informed vasculitis-patients like myself. So he and I decided on the spot to found a support-group. During the next weeks we were to learn how many problems are connected with that and how much work has to be put into it. Despite many setbacks we are not going to leave our chosen path. In the meantime we have created our own homepage , an open forum where we publish not only actual dates but where we try to discuss all the problems that occur. We are still only at the beginning but I hope I be able to publish news of further success in one of the next "Newsletter"s.