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Young Görlitzer lives with a rare disease: “I can eat as much as I want”
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More than 8,000 people in Germany live with cystic fibrosis: One of them is Änne-Sofie Rieger from Görlitz.
Goerlitz/Dresden – More than 8,000 people in Germany live with cystic fibrosis – a congenital metabolic disease that is still incurable. One of them is Änne-Sofie Rieger from Görlitz.
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Änne-Sofie Rieger (16) has the rare disease cystic fibrosis. © Petra Hornig
Last Friday she celebrated her 16th birthday – in the hospital! At the Dresden University Hospital, she had an insulin pump set up, which will be her new constant companion from now on. Because Änne-Sofie has also been suffering from type III diabetes for seven years as a result of her illness.
She was diagnosed with cystic fibrosis at birth. “When I was feeding, I cried out in pain. The stool in my diaper was greasy and runny instead of solid,” she says. To keep the disease at bay, she has to swallow 20 pills a day for the rest of her life. And eat a lot!
“My metabolism is basically faster than I can eat. I can eat as much as I want without gaining weight.” Full-fat butter instead of margarine, better high-calorie fast food and milkshakes.
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She often lacks the physical stamina for this – at school with sports, at home with climbing stairs. “I need a breather by the third floor at the latest.” The symptoms improved with more and more modern medicines. Wearing a mask was also part of everyday life for her even before Corona.
The mask is her life insurance because her immune system is not as strong as her classmates.
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The young woman from Görlitz has to spend a lot of time in the hospital. © Private/Petra Hornig
But living with cystic fibrosis is sometimes like running the gauntlet. “I was bullied at school. Sometimes I was really happy when I could recover from teasing during the hospital stays or at four-week cures in Tannenheim near Freiburg im Breisgau or on the island of Amrum.”
But she also met fellow sufferers through the disease and during a cure in 2019 she met her best friend: “She also has cystic fibrosis. That’s why I can talk to her like no one else about what I feel about the disease.” The two are of the same heart and soul: “When we come of age, we want to go on vacation together – preferably in New York.”
For an exhibition in Dresden’s main and Neustadt train stations, those affected should draw themselves as they see themselves. Änne-Sofie painted herself in two parts – once as a lively teenager, once with a mask on the infusion needle. Patients big and small should also state their wishes and goals in life. “My wish is to become an emergency paramedic,” writes the Görlitz native under her drawing.
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She is still looking for an apprenticeship in her hometown, “because I would like to stay in Görlitz with my family and friends”.
Änne-Sofie knows that she will probably die earlier than others because of her illness: “That’s why I live more intensively, use every minute with friends and would like to become a young mother.” She also knows that every twentieth person is healthy as a carrier of the “muco-gene” but can transmit the disease.
“I don’t care whether my husband is a gene carrier. I would also lovingly raise a sick child.”
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