I CARE
because
I'M RARE
Living with a rare disease is one of the biggest challenges I have ever faced. It takes everything from you and at the same time you learn to appreciate the real important things in life: every single breath.
I was diagnosed with the Swyer-James syndrome 10 years ago and shortly afterwards I had to have some lung segments removed by surgery. I was 17 when my whole life changed. This blog tells my story and is intended to encourage sufferers and relatives to live with the syndrome. I would also like to generate awareness that helps to further investigate and treat the disease properly.
Swyer-James
MY LIFE WITH
Swyer-James-Syndrome
What is Swyer-James-MacLeod syndrome? How do you recognize it and what changes take place in the lungs?
My path to the diagnosis of Swyer-James syndrome was a long and rocky one. It took almost a year before my pain was believed and I was no longer dismissed as a crank.
For more than ten years, I have been living with a significantly smaller lung volume. Even though my life is no longer in danger at the moment, I live with pain every day and repeatedly encounter incomprehension from doctors.
MAY THE FLOWERS REMIND US WHY THE RAIN WAS SO NECESSARY.
- XAN OKU
THE LATEST
Schwangerschaft & SJS
Six years after my lung surgery, the severe pain in the area of my operated lung started. Every time I took a breath, it felt like my left chest was cramping badly. It took four more years before I was finally diagnosed with Postthoracotomy Pain Syndrome....
