What is mucoviscidosis?

The term mucoviscidosis, also known as cystic fibrosis, is derived from the Latin words “mucus” and “viscidus”, which literally translated mean “viscous mucus”. Cystic fibrosis is the most common hereditary metabolic disease and is triggered by a genetic defect. As a result of this genetic defect, an abnormal, viscous mucus builds up in various organs which can cause severe impairments, especially in infancy or childhood.

Cystic fibrosis cannot be transmitted via airborne infections or blood. In addition to considerable respiratory problems and restrictions in the supply of vitamins, blockage of the pancreas prevents fats and proteins from being digested properly, which in turn produces further symptoms. Life expectancy is also reduced, although it has been possible to significantly increase it again in recent decades – especially when the illness is treated extensively at an early stage.

How many people suffer from cystic fibrosis?

According to estimates, 5% of all people in Germany, that is around 4.1 million, are carriers of the disease. People are classified as carriers when they carry the genetic defect but it is unable to break out. If two of these carriers have a child together, then statistically speaking the child has 25% no genetic disposition, but is also 50% a carrier or 25% suffering from cystic fibrosis. According to www.kinderatmung.de around 8,000 patients are currently known to exist in Germany.

What does cystic fibrosis mean for those affected?

According to www.kinderatmung.de the following are only a few of the results of suffering from cystic fibrosis:

  • Severe cough
  • Shortness of breath
  • Perspiration with high salt content
  • Digestive disorders
  • Impaired growth
  • Underweight
  • Lifelong medical treatment
  • Missing digestive juices
  • Problems with the supply of vitamins
  • Regular inhalation treatment
  • Respiratory therapy
  • Physiotherapeutic treatment to remove the mucus
  • If necessary, supplying of oxygen
  • Impaired life expectancy

According to the current state of knowledge, cystic fibrosis cannot be healed, even though the genetic defect (a variation on the long arm of the 7th chromosome) was already being researched as far back as 1989! This illustrates the huge need for further research into the illness to be carried out.

Why are we helping Mukoviszidose e.V. Gießen with our Christmas donation for 2018? And why should you help?

Cystic fibrosis is a serious illness which is usually very distressing for those affected, strongly impinging on their quality of life! However, as there are insufficient public funds available, it is not possible to provide appropriate care for patients or perform intensive research without additional donations!

The cystic fibrosis friends’ association Mukoviszidose-Förderverein Gießen e.V. is raising money for (trans)regional research into cystic fibrosis and doing important work in informing and educating people about the illness, with the aim of improving the quality of life and life expectancy of the patients. According to the association, a total of around €100,000 needs to be raised annually in order to keep existing research into cystic fibrosis going and to make new projects possible.

Account for donations to Mukoviszidose Förderverein Gießen e. V.

Bank: Sparkasse Gießen
IBAN: DE68 513 50025 0200 604 120

Your donation is subject to preferential tax. The full amount will be received.

On one’s own account

Both the staff and management at Hailo Wind System GmbH & Co. KG have agreed on an initiative by the work council to make this staff donation to the Mukoviszidose Förderverein Gießen e. V. this year.

The amount raised will be doubled by our owner, Mr Sebastian Loh, at his own expense.

We would like to thank all involved and all other donors and supporters in advance for their contribution!