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What kind of therapeutic aid do children with cystic fibrosis need?
Every year more than 200 children are born in this country with the metabolic disease cystic fibrosis. This is not curable until today, but is now considered to be easy to treat. Many patients are dependent on medical care throughout their lives. Accordingly, expectorants, inhalations, respiratory therapies and regular medical appointments form an integral part of life even among the little ones. The news agency "dpa" shows the example of the 2-year-old Nalu how affected children can be helped in the best possible way.
Child comes with blue skin and bloated belly to the world
At the time of the birth of Nalu, now two years old, nobody knew what was behind the pregnancy complications that occurred two months before the scheduled date. Nalus mother came to the clinic, the child was delivered by caesarean section and came with purple-blue skin, bloated abdomen and twisted intestine to the world, which had to be removed partially surgically. Then the baby got an artificial diet via a nasogastric tube, but it did not put on weight, according to the report of the "dpa".
Cystic fibrosis causes excessive mucus formation in the lungs and other organs. (Image: bilderzwerg / fotolia.com) Genetic defect ensures mucous congestion of lungs and organs
According to various studies, the neonate has been diagnosed with the metabolic disease cystic fibrosis, which is often referred to as "cystic fibrosis" (CF) and is one of the comparatively rarer diseases in Germany with about 8,000 affected persons. The term goes back to the Latin words mucus (mucus) and viscidus (tough), because characteristic of the disease is a tough mucus, which is formed due to a genetic defect in many organs of the body. As a result, sufferers suffer from, among other things, chronic cough, frequent pneumonia and underweight.
Both parents must be carriers of gene expression
"The viscous mucus produced by a genetic defect clogs and damages primarily the lungs," explains Hamburg child pneumologist Christoph Runge to the news agency. But other organs such as the pancreas are affected by the secretion clogs the ducts of the gland and obstructs a sufficient formation of digestive enzymes (exocrine pancreatic insufficiency). As a result, sufferers suffer from other complaints such. Flatulence, diarrhea, abdominal pain or fat stool, as well as it can come in neonates to an intestinal obstruction.
The various symptoms can already occur in childhood
According to the Federal Ministry of Education and Research, every year more than 200 children are born throughout Germany who suffer from cystic fibrosis. Cystic fibrosis is an autosomal recessive hereditary disease, which means that a child only becomes ill if both parents are carriers of the defective allele. The hereditary disease is not curable so far. But if the diagnosis is made early, appropriate treatment for the small patients can lead to an improved quality of life and increased life expectancy.
Medication, inhalation and physiotherapy firmly integrated in everyday life
"We do with Nalu a daily therapy, which is very time-consuming," says the father of little Nalu, Marc Kamps in conversation with the dpa. These include, for example, a three times daily inhalation for 20 minutes each to loosen up the viscous mucus and the intake of vitamin preparations and enzymes for fat digestion. In addition, there are regular visits to the doctor, where the susceptible airways are examined by means of a smear for dangerous pathogens. Another component of the treatment is the one to two-week physiotherapy, which is complemented by exercises at home. The costs are covered by the health insurance. "We show parents, for example, how to inhale at home with their child," says physiotherapist Stefanie Ollig. If the affected children are already older, breathing techniques would also be mediated, because "the mucus will be breathed as far up as possible in order to then be able to cough it off effortlessly," the expert continues.
Despite good therapeutic success, the disease remains a threat
Nalus father looks confidently into the future. "It's nice to see that people with cystic fibrosis are over 50 today," says the 36-year-old from Hamburg. Accordingly, it is important for the well-being of his child, that this takes the tablets and inhale. But even with consistent adherence to the treatment plan, "cystic fibrosis [.] Continues to be a threatening disease," explains Christoph Runge. The boy could already experience this firsthand. In one of the regular check-ups, the so-called "MRSA bacteria" were detected, which are particularly dangerous in cystic fibrosis patients and z. B. can cause blood poisoning.
"You go carefree to the smear, and then the world collapses," says Kamps. The situation was also very difficult for Nalus' older sister, because she had to "already understand more about her brother's illness than she should at six". In order to provide children with information and better access to the disease, he is now working on developing an app together with the children's pneumologist Frank Ahrens from the Altona Children's Hospital and the Association for Cystic Fibrosis. This should be available from 2016 and revolve around the protagonist "Patchie", which should promote as an alien with cystic fibrosis understanding and responsibility. (No)