Cora’s story

My name is Cora Bergmann, I am 23 years old and I live in Berlin, Germany, with Cystic Fibrosis (CF). I was diagnosed at birth, because I had a CF-characteristic blockage and a ruptured small intestine. Digestive issues were the main impairment to my quality of life for the following years.

I threw up all the time, had frequent pain and problematic eating behaviour. To this day, there is no definitive answer as to why I ate like that, but my guess would be a physiological cause, like bloating, amplified by my psychological response (i.e. fear of throwing up), that became chronic even after the organic issues were resolved. Now, I enjoy eating and cooking so much, I don’t feel the slightest fear of slipping back into these patterns. Respiratory infections were never as much of a problem. Strictly following routine preventative treatments and getting checked for new infections regularly seems to work. When p. aeruginosa did show up, I got rid of it with inhaled antibiotics for 2 hours every day, for three months. I am anxious about getting this or other infections again, but that’s inevitable in the long run.  

I was always interested in how my body worked, as a person with a disease and just as a human. Luckily, my mother studied pharmacology, so she had a good understanding of my medication and could always explain to me how it helped me in ways I could understand. My physiotherapist was also a great help. They did home visits all through my childhood. Knowledge wise, I was as prepared as you could be. The only thing that made me feel overwhelmed sometimes was the paperwork with state welfare and insurances, but that has got a lot better. A learning process for both me and my mother was the transfer of control over my food intake. Reminding me to eat had been essential for many years to ensure a healthy weight. I was very eager to manage it myself and understood that I needed to eat enough. When we noticed that I managed to maintain my weight, I felt at ease and ate more intuitively and less focused on sheer calories.  

My CF-team in Berlin is a joint team of pediatricians and adult doctors, so there were barely any changes for me. I went to the same clinic and still saw the same staff around. Every patient is assigned to a primarily responsible doctor, who changed multiple times over the last years, but it was never a problem, as I only needed routine check-ups and prescriptions.  

The only noticeable transition was in primary care. My pediatrician in my hometown in the suburbs of Berlin was able to prolong my time with her until I was twenty-one, but after that I had to change to an adult doctor. My pediatrician was someone I trusted for many years and would squeeze me in at short notice if need be. When I first tried to find a new adult practitioner, I couldn’t believe how long it took to get someone on the phone, let alone an appointment. To avoid these problems, I schedule more frequent appointments with my specialists. The commute is a little longer, but still proportionate, considering the advantages of consulting a team of their proficiency. 

I am in very good health overall! I can do sports, have hobbies, study law full time with a scholarship. The last two semesters I spend abroad in Switzerland. Obviously, I had some more things to consider than healthy students, but all doubts and problems turned out to be manageable. It paid off greatly, as I learned to live on my own, learned to speak somewhat fluent French and understand Swiss German.