In September 2020, after months of mysterious and troubling symptoms, I was diagnosed with multicentric Castleman disease (iMCD)—a rare, life-threatening autoimmune disorder. My journey to diagnosis was long and uncertain. Despite a range of severe symptoms, doctors struggled to connect the dots, and my case seemed to defy clear answers. The uncertainty was overwhelming as my health deteriorated. By early September, my body was in critical condition, with multiple organs beginning to fail. Before I got a diagnosis, I would wake up every morning the way I look in this picture.
I was fortunate to meet a doctor who had at least heard of Castleman’s disease, although I was his first iMCD patient. Even without a confirmed diagnosis, he initiated antibody therapy, which quickly became the turning point in my battle. Only days later, the official diagnosis of iMCD was confirmed. But a diagnosis was just the beginning of a lifelong journey.
In Germany, there is only one approved drug for iMCD, and it’s effective in only 30-50% of patients. Unfortunately, I fall into the group for whom this treatment doesn’t work. Finding a medication that keeps me stable has been a continuous process of trial and error. The road is often frustrating and filled with uncertainty. In the world of rare diseases, answers are few, and questions seem endless.
One of the hardest realities is that as a patient, I often have to educate doctors about my condition. Castleman disease is so rare that many healthcare professionals aren’t familiar with it, leaving patients to advocate for themselves at every turn. And tragically, there are patients who lose their battle with this disease.
That’s why I’m committed to helping change this reality. By raising funds and conducting research, the goal is to push for better treatments, more awareness, and ultimately, a cure for iMCD.
Together, WE CAN TURN HOPE INTO ACTION!
This is not just my story—it’s a call to arms for the entire Castleman community. By supporting research and advocacy, we can help create a future where iMCD patients no longer face these same struggles. Let’s push forward, united in the fight against Castleman disease.