Bonn (OTS) – The nationwide patient organization Mukoviszidose eV calls to life the Mukoviszidose Month May in Germany. Campaign Month, which has been established internationally for some time, aims to help better understand the rare hereditary disease in this country and give a face to people with cystic fibrosis. In addition to the many information proposals, a central element of Campaign Month is the hands-on sporting event muko.move from 19 to 22 May: 8,000 hours of exercise to be collected for the approximately 8,000 people with cystic fibrosis in Germany. (cystic fibrosis, CF)
Cystic fibrosis is still an incurable disease
Despite great advances in medicine and research in recent years, a diagnosis of cystic fibrosis still comes as a shock to many parents. The same goes for the Baumann family in Wolfsburg: four months after the birth of their second son, Albert, Amrei and Bernd Baumann discovered that he was suffering from an incurable metabolic disease. Albert’s start in life was difficult. Barely 24 hours old, he had to undergo an emergency operation and was given a temporary artificial anus. Even after the operation, the little one was not feeling well – he was not really gaining weight, he had trouble breathing and was constantly full of mucus.
“We were desperate because we didn’t know what Albert had before. When the diagnosis came, it was a relief on the one hand — on the one hand, the news of an incurable disease pulled the rug from under our feet,” said his son. Amri remembers Bauman in the first months of life. “The seminars and information presented by Mukovizidoz EV were very helpful to us, where we learned how to cope with the disease in everyday life and reduce fear in return for other affected families.” Today Albert is four years old and his parents share their experiences dealing with the disease as honorary leaders of the Wolfsburg regional group Mukowizidoz EV.
Get Attention Through Action Month
Mukovizidoz EV has been committed for over 55 years to helping those affected, promoting research and informing the public about multi-organ disease. For example, following the example of International CF Awareness Month observed in Australia, the US and Canada, the German Federal Association would like to establish May as a campaign month for cystic fibrosis. With May’s cystic fibrosis month, a targeted approach should attract even more attention. To this end, the association publishes a variety of information and personal stories about life with cystic fibrosis on its blogs and social media channels and invites people to participate in joint activities.
Hands-on sports campaign muko.move . carry something together with
A central event of May’s Cystic Fibrosis Month is the hands-on sports campaign muko.move, which takes place May 19-22. Anyone who wants to help draw attention to this disease is invited. The challenge is this: 8,000 hours of exercise are to be collected for the approximately 8,000 people with cystic fibrosis in Germany. Participation in any favorite sport is permitted, whether cycling, yoga, soccer, running or hiking, whether alone or in a team, as a family, with friends or in company. What matters is the pleasure of the movement and the time spent in the movement, not the performance, speed or mileage. Movement times are documented with photos or videos on online portals and on social media.
More information about the disease and function of Mukoviszidose eV: https://www.muko.info
Information and registration for muko.move: https://communitymove.de/muko-move
background information
About cystic fibrosis
In Germany, more than 8,000 children, adolescents and adults are affected by the incurable hereditary disease cystic fibrosis. Disruption of the salt and water balance in the body leads to the formation of a sticky secretion in people affected by cystic fibrosis, which causes irreparable damage to organs such as the lungs and pancreas. About 150 to 200 babies are born with this rare disease in Germany every year.
Mukoviszidose eV . About this
Mukoviszidose eV network patients, their relatives, doctors, therapists and researchers. It bundles a variety of experiences, skills, and perspectives with the aim of enabling everyone affected with cystic fibrosis to live as independently as possible. To achieve common tasks and goals, the nonprofit relies on the support of dedicated donors and sponsors.
Press Contact:
Mukoviszidose eV Carola Wetzstein Phone: +49 (0)228987 80-22 Mobile: +49 (0)171 9582 382 Email: [email protected]
Original content from: Mukoviszidose eV, news transmitted by aktuell
Press Portal Newsroom: mukovizidoz EV
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