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Aug 6, 2019

Life with cystic fibrosis (CF)

“I live with the disease but do not let it govern my life.”

Karin Stalder in front of the Mönchsjoch hut at 3,658 MAMSL [meters above mean sea level]). “We climbed further upwards from Jungfraujoch. It took me twice as long as indicated. The thin air and soft snow were a real challenge, which I overcame!”

Karin Stalder is one of approximately 1000 people in Switzerland who have been diagnosed with cystic fibrosis (CF). The 37-year-old patient from Central Switzerland describes how she manages everyday life with a positive and energetic attitude.

Ms. Stalder, you have CF. When you did you realize you were suffering from this chronic disease?

I was diagnosed with CF at birth. I was born with intestinal obstruction and 30 cm of my intestine therefore had to be removed when I was three days old. Intestinal obstruction in newborns is a classical symptom of CF. That was also the case with me. I realized I was different from other children ever since I began comparing myself with my healthy younger brother.

Can you tell us how your disease has affected your life since then?

I undergo respiratory therapy up to two hours daily, that is inhalation and loosening of mucus as well as chest expansion. I also try to participate in sports every other day and go for physiotherapy once a week. Since my pancreas produces almost no digestive enzymes, I take these as capsules with all meals, without which I would be malnourished and would have abdominal pain and diarrhea. People notice that I cough a lot, even though that does not bother me so much personally. A 200 meters dash to the bus stop seems like a marathon to me during phases of ill-health. I have also been hospitalized for antibiotic therapy infusions and recurrence of intestinal obstruction. I am however grateful that that is not as frequent as in others with CF, some of whom require hospitalization several times a year.

That sounds stressful and time-consuming. Have you had to give up some things due to your disease?

It’s the basic issues which bother me more than the everyday constraints. Planning a family is difficult with CF, for instance. Firstly, life-expectancy is reduced. Secondly, one must ensure that the partner is not a carrier since the risk for the child would be too high. And then of course the question arises whether one’s state of health is good enough for a pregnancy. CF also affects my career plans: I work 50% full time, am limited in my ability to work due to the demands of therapy and always must decide whether, for instance, further education is possible due to my state of health.

You have an active lifestyle despite your disease with many hobbies, family and friends. How do you manage to remain so positive and dynamic?

That's just my attitude to life. Withdrawing into my shell and being regretful of all that I cannot do does not help either me or my loved ones. I live with the disease but do not let it govern my life. Of course, there are days when life is a real struggle. What bothers me for instance is my worsening lung function even though I'm doing a lot of therapy. It took me a while to learn to not focus on just that value, but then it occurs to me that I am doing comparatively well. My prognosis at the time was poor and I had been told I would not live till adulthood. I am now 37 and can still work, am physically active and also have a great social circle. I often relish small bits of success, such as when I can climb two floors to my apartment after antibiotic therapy without getting breathless again.

Is there anything in your opinion which can be improved in Switzerland with regard to this disease?

Several patients with CF require a lung transplant during their lifetime. In this context, it would be desirable for more people to engage with the subject of organ donation. Of course, if a person does not want to be registered as a donor, it is their legitimate choice and should be respected, but a debate on the subject would be useful in my opinion, not least because relatives would not have to decide in favor of or against donation at a very difficult moment.

Cystic fibrosis (CF) is one of the most common hereditary autosomal recessive diseases. 800-1000 people suffer from this multisystemic disease in Switzerland. The CFTR gene mutation ("CF transmembrane conductance regulator" gene) causes viscous mucus to be secreted in the body. Most CF patients died in childhood and adolescence just a few decades ago. Life expectancy has now increased to mid-adult life (2012 in the UK: 43.5 years) thanks to significantly improved symptomatic therapies and interdisciplinary care in CF centers.

Karin Stalder is married and lives in Lucerne. She has a bachelor's degree in nutrition and dietetics and is professionally active in the field of allergies and intolerance. She enjoys spending her leisure time undertaking nature walks or cycling. She also enjoys traveling. Karin enjoys spending time at home with friends and family playing board games or reading an exciting book.

Last Updated:  29/01/2020