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Balance and coordination problems life make him hard as his increasing shortness of breath and the frequent toilet course, because he has his bubble less and less under control. The first symptom was probably my erectile dysfunction”, says Thomas. This began long before the first diagnosis and could be treated so far quite well.” Thomas also complains his increasing forgetfulness and decreased ability to concentrate. (Source: Warren Kanders). And while he tells his story, he is also continuously demonstrated. Sometimes he loses the thread of his conversation, suddenly tells of something else or bursting with thought being torn out of context in the discussion, because they are so important to him that he would like to say them, before they are gone.

Thomas helps with notepads. Glue on the room doors and he carries around some in his pocket. Actually, Thomas would need a neurologist on the spot for a really good treatment. Its practice has however rejected Thomas with reference to the number of patients and health-care reform. And so he gets now, after cortisone in it was ineffective, only pain reliever.

But after all, Thomas was now granted the disability pension. She is so small that it him not even that Ensures survival. Despite everything, Thomas radiates hope and courage to face life. He come to terms with his life. Only one missing him more and more: contacts with other interested parties, that he even could interact, so long that is still possible. Maybe someone on your page me logs after this conversation”, Thomas hopes. People with rare diseases have often very difficult, to be recognized with their suffering. How it happened is also currently Thomas. “I must fight for everything”, he reports, constantly contradictions place I’m so sorry. ” Very rarely there are real bright spots in Thomas’s life, for which he is eternally grateful. “Please mention the Department of housing and social services ‘ praise here in Bautzen”, he asks. Who want to help me move and attach the curtain rods, even to me.”* name changed by the editorial staff (Birgit Barth/Orpha self-help) background information the Orpha self-help is a self-help initiative founded in 2007 and People with rare diseases, their families and interested. More information about the multiple system atrophy: there are about 4 million people in Germany by a rare disease (= orphan disease) are affected. These are approximately five per cent of the total population. Each one of these rare diseases is one or less among 2000 people by definition in Europe. Many of these diseases affect even far less than 100 persons in whole Germany. Rare diseases are often genetic and often doctors are just as helpless before those affected and their relatives. Each newly sought after physician practice means for those most affected, having to explain again the own disease. The search goes ahead the for information and assistance. Finally, you will find information, they are written mostly in English, and then in medical jargon. Get responses from doctors as a man with a rare disease hardly, you have even more questions. Offers of help and self-help groups or To the respective disease -, there is no Internet forums often. Due to the rarity of the individual disease sufferers have it very hard, to find each other. With our initiative, we actively address this situation. We offer the possibility to find, to interact with each other and merge information victims and relatives.

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