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The eighth Summer - A film by Andrea Schramm


Krankenhaus

Two lovers with a zest for life, moments of unbridled happiness and a deadly disease.
more infos about the film


CYSTIC FIBROSIS – Breathing as if through a Straw

"Having cystic fibrosis feels as if constantly breathing through a thin straw."
Aline Fussy

Aline-als-Kind

Since their childhood, Aline and Christian Fussy have been aware of the fact that they are suffering from cystic fibrosis, the most common inborn metabolic disease in Europe. In Germany, approximately 10,000 children and young adults are affected each year, suffering from symptoms like chronic coughing, regularly reoccurring pneumonias and shortness of breath. The disease is caused by a genetic defect and is as of yet incurable.

Extensive therapies – including daily inhalation, a special diet, physical therapy, sports, antibiotic therapies and regular convalescence stays – relieve the discomfort and suppress inflammations. Aline and Chris met on a climate cure in Abu Dhabi and fell in love with each other. They call each other and their affected friends "Mukos" – after "Mukoviszidose", which is the German term for cystic fybrosis.

Aline und Chris

"We don't consider ourselves to be less happy than other people. They have more time, but we use our time more intensely and are cherry-picking within our lives."
Aline Fussy

One in 25 German citizens is carrying the CF gene and could possibly pass it on. But only if both parents are carriers the child will get the disease. As a consequence of this error in the cellular blueprint, a thick secretion is cumulatively clogging up the lungs and the pancreas, specifically. Little by little, the organs are weakened, and in the end, the affected are lacking the strength to breathe. Nonetheless, they are trying to delay a transplantation as long as possible.

"The longer I breathe with my own lung, the better, because a transplantation is no cure. I might not be a cystic fibrosis patient anymore, but I'll be a transplantation patient. I'll be exchanging one ailment against another. But it is a chance to live a few years longer."
Christian Fussy

Being 37 years old, Chris was seen by his friends to be a "Muko Chief" – a knowledgeable person they could ask about the disease and how to handle it. Today, the average life expectancy of cystic fibrosis patients lies at 30 - 40 years.

Dr. Staab Aline and Chris with their attending senior physician Dr. Staab

Cystic fibrosis used to be regarded as a fatal childhood disease, but new therapies have enabled the affected to reach a higher age, with some patients being over 60 years old already. But at some point they all reach a point where medicinal therapies are not effective anymore – pulmonary functions decline, and breathing becomes difficult.

Patients are left with only one chance: a lung transplant. For the affected, the decision for or against a lung transplantation is often a long and very personal process, because the decision for a transplantation is a decision for a difficult path with an uncertain outcome. 50 - 70 % of transplant patients live five years or longer. Many lead a more or less normal life for many years.