At the age of 17 I had the symptoms of Swyer-James syndrome for the first time. Countless visits to the doctor took two years of my youth and serious misdiagnoses almost cost me my life. It was all 10 years ago and the time has come for me to write about it.
My story is just one of many.
"It is a miracle that you are here in front of us."
In 2010 a whole world collapsed for me. For two years I had previously tried to find a solution to my lung volume suddenly falling below 40% and, above all, a remedy for my chest pain. Two years in which learning for my German-French Abitur with various visits to the doctor came into my hands. Two years in which I was looking for people who believed that there was something. When I finally reached the end of my trip, I couldn't and didn't want to admit it myself. My diagnosis: Swyer-James-Macleod syndrome with spontaneous pneumothorax. To this day, I have not forgotten how I looked into the faces of various doctors at the St. Hedwig Hospital in Berlin who told me that they had never seen anything like this before. A patient who laughed and was responsive despite her predominant spontaneous pneumothorax. "It is a miracle that you are here in front of us." one of the doctors said to me at the time. According to the CT, a questionably large amount of air had already flowed into the pleural space without being able to find its way out. The heart was clearly pushed aside and there was a risk to life. Ten years later and a few lungs apart, I have now decided to write about my story. The disease not only deprived me of a carefree youth, but also changed my entire life. The way I see and deal with things and above all my relationship with doctors. Even ten years later, I still feel uncomfortable when I enter a treatment room. After I was told at the time that I would no longer need any medication a few years after the operation, I am now taking more medication than ever before. The pain in my chest has now become an omnipresent warning to my health. My trust in doctors has almost been wiped out. I know there are more of us out there! It doesn't matter whether you know someone who suffers from Swyer-James or you yourself are. This blog should give you strength, inspiration and above all an outcry not to trust every doctor. Listen to your body and fight for transparent treatment. Don't be fooled into thinking that it's all in your head! Swyer-James-Macleod syndrome is still completely unknown over 60 years after it was discovered. I am convinced that together, whether as a person affected or as a relative, we can draw up our own long-term study on the subject of Swyer-James-MacLoed syndrome and thus help many people.