Castleman Disease Collaborative Network

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Ulrike Rott

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$1,000 Goal

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I was diagnosed with multicentric Castleman iMCD disease in September 2020. A rare and life-threatening autoimmune disease. I had health problems for months before, but all the symptoms did not result in a "red thread" for the doctors for a long time. Many non-specific symptoms that could be caused by different diseases – from cancer to I don't remember what. An odyssey of investigations followed. At the beginning of September, I was in critical condition. Several organs no longer wanted to work properly. At that time, I was lucky enough to meet a doctor who had already heard of Castleman's disease, even though I was his first patient. Without a confirmed diagnosis, he started with antibody therapy, which was the turning point for me. A few days later, the diagnosis was officially confirmed. However, the diagnosis of a rare disease is only one stage on a lifelong journey. There is only one approved drug for iMCD in Germany, which only works in about 30-50% of patients. Everyone else tries to find a permanent medication that keeps them stable through trial and error. I also belong to the second group. There are many questions, but rarely answers. You get used to the fact that as a patient you explain your own illness to the doctors. And unfortunately, there are always Castleman patients who don't make it. To change this situation at some point, we are collecting funds and conducting our own research:TURN HOPE INTO ACTION!!!!

I'm fundraising for Castleman Disease Collaborative Network because they do amazing work, and I'm inviting friends like you to support my campaign. Thanks for taking a moment to check it out!

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