Cystic Fibrosis: Caroline Is In Control

Introduction

Cystic fibrosis is a genetic disease which is relatively rare in Germany. LMU student Caroline Schambeck is one of its victims, but she does not let her illness dominate her life, and was recently awarded a Deutschlandstipendium.

Main Digest

Cystic fibrosis (CF), also known as mucoviscidosis, is a genetic disorder that affects mostly the lungs but also the pancreas, liver, kidneys and intestine. Long-term issues include difficulty breathing and coughing up sputum as a result of frequent lung infections. Other symptoms include sinus infections, poor growth, fatty stool, clubbing of the finger and toes, and infertility in males among others.

Different people may have different degrees of symptoms. But although she is fully aware of the fact that there is no effective long-term treatment for her condition, Caroline has never lost her determination to live her life to the full.

Caroline, Not Her Condition, Is in control

Caroline, who began to study Earth Sciences in 2012, must take special care during the winter months.

Even when she is feeling well, she has to take drugs regularly, do breathing exercises and use an inhaler for up to 90 minutes every day. Otherwise minor ailments can be live-threatening for her, and she must increase the drug dosage.

"Tablets can be knocked back quickly," she says and there are plenty of places at LMU to which she can withdraw with her inhaler during the day.

She uses the inhaler in the mornings when she is still drowsy, gets through her breathing exercises while watching TV and goes to a physiotherapist once a week. Most of her time, she says, is devoted to what she jokingly calls "my real passion" - pumping iron in the physiotherapist's practice across the street from her home. When that session is over, she's ready to review the day's lectures.

There has been some recent progress in the search for ways to ameliorate CF, but there is still no cure in sight.

Currently, the only real option - in Caroline's case too - is lung transplantation. She underwent the necessary preliminary tests in 2014.

"My lung is in such bad shape that I really need a new one," she says.

But suitable donor lungs are scarce and the waiting list is long. Thanks to the training regime she has had to follow since she was very young, the 26-year-old has learned to cope with her illness.

"My parents never tried to keep me wrapped up in cotton wool," she remembers. In retrospect, she is grateful: "That is the real reason why I am still feeling well although my medical readings are not all that good."

From Therapy to Thesis

Caroline is studying Geosciences in a program jointly designed by LMU and the Technical University of Munich.

"I have always been interested in geochemistry," she says. "What I find fascinating is that the subject has so many facets - taking in the mining and processing of ores, environmental and sustainability issues as well as classical geological topics like volcanology. Her experiences at both universities have been very positive", she adds.

All her professors acknowledge the special difficulties posed by her illness and help her master them - even during excursions in mountainous terrain or when she is forced to miss lectures.

"When I am going through a bad patch, I may have to spend a fortnight in hospital."

In such cases it has always been possible for her to postpone exams and catch up on course work.

At the beginning of this term she picked up an infection and had to spend time in hospital. So she now has to work twice as hard, and she has an obligatory laboratory practical coming up in preparation for her Master's thesis. When she has finished her studies she would like to work in a lab.

"I can't work fulltime, and then there is the problem of whether I should mention my illness in job applications," she says, before answering the question for herself: "I have never tried to hide my illness and that has never done me any harm." And if a potential employer expects the same level of performance from me as from a person in normal health, then he will just have to do without me, she adds. "I have to look after myself - it's the only way I can maintain my quality of life."

Cystic Fibrosis Facts and Statistics

• In Canada, there are approximately 4,000 people with CF.
• Cystic fibrosis is diagnosed in males and females equally.
• In the United States, 1 in 3,500 children are born with CF.
• Ireland has the world's highest prevalence of cystic fibrosis, at 1:1353.
• Cystic fibrosis is often called mucovicidosis in other regions of the world.
• In the United States, approximately 30,000 individuals have CF; most are diagnosed by six months of age.
• Children with cystic fibrosis have very salty sweat, due to the abnormal protein manufactured by the cystic fibrosis gene.
• Approximately 1 in 25 people of European descent, and one in 30 of Caucasian Americans, is a carrier of a cystic fibrosis mutation.
• CF is not curable at this time, but with today's improved treatment most people with CF are able to lead reasonably normal and productive lives.
• CF is an inherited condition. For a child to be born with CF both parents must carry the CF gene. Carriers of the gene do not have any symptoms of the condition.
• Until the 1980s, most deaths from CF occurred in children and teenagers. Today, with improved treatments, some people who have CF are living into their forties, fifties, or older.
• Cystic fibrosis is most common in white people of Northern European ancestry, but also occurs in Hispanics, African-Americans and some Native Americans. It is rare in people of Asian and Middle Eastern origin.
• Today, more than one million Australians carry the faulty CF gene. One in every 25 people, often unknowingly, carries the CF gene. Some 80% of parents who have a child with CF were unaware they were carriers.
• Genetic carrier testing is available, and involves testing a sample of saliva or blood to see if you carry the gene for cystic fibrosis. This test may be offered to women who are pregnant, or trying to become pregnant, and their partners.
• In 1997, about 1 in 3,300 caucasian children in the United States was born with cystic fibrosis. In contrast, only 1 in 15,000 African American children suffered from cystic fibrosis, and in Asian Americans the rate was even lower at 1 in 32,000.
• More than 1,000 different mutations in the CFTR gene have been identified in cystic fibrosis patients. The most common mutation (in 70% of cystic fibrosis patients) is a three-base deletion in the DNA sequence, causing an absence of a single amino acid in the protein product.

Attribution/Source(s):

This quality-reviewed publication was selected for publishing by the editors of Disabled World due to its significant relevance to the disability community. Originally authored by LMU Munich, and published on 2017/01/13 (Edit Update: 2022/03/22), the content may have been edited for style, clarity, or brevity. For further details or clarifications, LMU Munich can be contacted at en.uni-muenchen.de. NOTE: Disabled World does not provide any warranties or endorsements related to this article.

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