Exercising with primary ciliary dyskinesia – an amateur runner reports

Christine Braune has primary ciliary dyskinesia (PCD). This genetic disease makes breathing difficult and makes her more susceptible to infections. Despite this, she can no longer imagine a life without running. In our interview she explains why.

PARI-Blog: Christine, you go jogging regularly despite your PCD. Why did you start running in the first place?

Christine Braune: I didn’t start exercising regularly until I was an adult and had a diagnosis of primary ciliary dyskinesia. My specialist clinic suggested that I take up an endurance sport to stay in shape and to exercise my lungs. For a long time I didn’t know what was causing my health problems. At the time, exercising wasn’t even something that I considered a possibility because I was always sick, tired and out of shape anyway. So when I got my diagnosis it was a revelation and a relief. I wanted to do everything I could to improve my health. This meant, in addition to inhalation therapy for my lungs and nose, exercising regularly. Running was the obvious choice because it is easy an easy sport to take up and you don’t need any kit except for clothes and running shoes. 

PARI-Blog: So, trainers on and, bam, you take off on an hour-long run? What were your first attempts at running like?

Christine Braune: No, definitely not anything like that. I had to work up to it slowly. After all, my health was pretty poor. I used a training schedule I found on the Internet with the aim of being able to complete a 30-minute run in 10 weeks. I started with walking or interval training: five minutes running, three minutes walking, five minutes running, three minutes walking, etc. After ten weeks I was actually able to run for 30 minutes without stopping.

PARI-Blog: How do you train now? What are your ambitions?

Christine Braune: These days, I run two to three times a week for between 30 minutes and an hour. In terms of distance, I go around five to eight kilometres. But even so, sometimes I still need to take short breaks. Whenever my nose runs because of the primary ciliary dyskinesia, and I have to blow it. But I know that I can run five kilometres in under half an hour despite my PCD. I am especially pleased that I am in better shape than some of my colleagues. But I don’t put any pressure on myself. I enjoy exercising. I feel better when I exercise and it helps keep my health stable. Since the beginning of 2018, I have also been entering more races, like the Schwerin Night Run and the Midsummer Night’s Run in Krakow am See. Most are 5Ks. The competition motivates me and it is reassuring to see that I can keep up with the healthy people there. In 2018, I have run in a total of 12 races. My personal best placement was in the Prignitzer Moormeile race in Bad Wilsnack – first place in my age group – with a time of 49’23 minutes over 7.8 kilometres. I stood on the podium with two other women and I was the winner despite having primary ciliary dyskinesia. That was my biggest win: keep up, persevere, win!

PARI-Blog: Inhalation therapy is part of the daily routine for PCD patients. Would it affect your ability to run if you didn’t use inhalation therapy?

Christine Braune: Absolutely. In the long term, without inhalation I would be limited in my exercise and would not be able to do much more. My breathing would be blocked, I wouldn’t have the stamina I have today. Furthermore, I would get colds more often and wouldn’t be able to train as regularly. The best proof of this is that I was completely out of shape five years ago when I didn’t know I had PCD and was not receiving the right treatments. At the time, it would have been unthinkable to exercise like I do now. For me, inhalation is the basis for my health. Health is the prerequisite for exercising. So I do not consciously do my inhalations longer or more frequently with the goal of improving my performance for a specific city race. Inhalation is the basis and it makes it fundamentally possible for me to by physically active with PCD. 

Note: The statements made in the interview are the individual views of the interviewee. They do not necessarily reflect the PARI view or the general state of science.

An article written by the PARI BLOG editorial team.

Back to overview