By Stephanie, Swyer-James-Syndrome, Germany, February 2, 2020
How it all began
My story began in 2008, only a few months after finishing one highschool year abroad. One day, it was a cold winter day in Berlin, Germany, I was leaving a day spa where I spent the last hours and was walking down the road to catch the next train to my parents home. While waiting at the traffic lights, from one second to the next, my upper body was suddenly moving to the right. I felt an incredible pain and thought that my ribs where broken. At the same time, it was nearly impossible to breathe in and out. Slowly, I continued my walk to the steps of the train station and knew that something was going absolutely wrong.
That moment was the starting point of nearly two years of doctor's appointments, strong pain and a lot of tears. I went from general medicine to pulmonology to cardiology to orthopedist, etc.... From day one on, nobody really belived me - apart from my family. The pain I described in my rib cage wasn't understandable by the doctors. They always told me that this kind of pain isn't possible and I am way too young to have any pain in my chest (I was 17 years old when this started).
Already in the first X-ray image, just a few days after my first pain attack, the docotors saw that my left part of the lungs was showing a hyperlucent area that was indicating a specific illness. But still, the docotors told me that I am too young to be sick - so no worries.
After this X-ray result and my final diagnosis more than 6 months passed. In the meantime, a lot of fainting attacks, countless doctor's and hospital appointments as well as "normal" highschool life passed.
In the end, I found a lung specialist who believed me: I was diagnosed by the rare lung condition Swyer-James-Syndrome. We decided together to remove the hyperlucient part of my upper lung area after I passed my a-level exams. That was the deal, but then only a few days before my last exam, I was showing up in a hospital to do a last examination before my surgery. And, I couldn't leave the hospital anymore. Reason was, that my lung was finally collapsed. After the doctors explained me that I had a spontaneous pneumothorax and they are sure that I had this one for a long time already, I couldn't stop laughing and crying at the same time.
The end of this story was a surgery where my doctor discovered also a large bullae in the middle of my lungs that was also removed.
Now ten years later, I wake up every day, feeling pain in my left lung, but beeing gratefull to be alive.
What is the Swyer-James-Syndrome?
Swyer–James–MacLeod syndrome, a rare condition characterised by the relative translucency, hypoperfusion and hypoplasia of one lung, was first described by Swyer and James in 1953 and MacLeod in 1954. Symptoms are generally nonspecific, including chronic cough and shortness of breath on exertion. The pulmonary hypoperfusion and hypoplasia seen in Swyer–James–MacLeod syndrome are thought to be caused by pulmonary infections early in life; however, the precise aetiology and factors predisposing to the syndrome’s development are not known. *
Stephanie, 29 years old
Founder of onehalfbreath, my goal is to support other Swyer-James-Syndrome patients and give as much hope as possible.
*US National Library of Medicine, National Institutes of Health A persistent pneumothorax? 5-year follow-up after diagnosis of Swyer–James–MacLeod syndrome