Mukoviszidose eV
Bonn (ots)
In Germany, May is the month of action for people with cystic fibrosis. With a variety of information and personal stories on social media and the blog, the nationwide patient organization Mukoviszidose eV makes the multi-organ disease better known and gives those affected a face. A central element of the cystic fibrosis month of May is the muko.move hands-on sports campaign from May 17th to 21st, in which everyone can take part, regardless of personal fitness: 8,000 hours of exercise are to be collected for the around 8,000 people with cystic fibrosis in Germany. (Cystic Fibrosis, CF)
Despite advances in therapy, cystic fibrosis is still incurable
Little Feenja from Rastede is only eleven months old and has already had three major operations: she had her first operation on the second day of her life, and in another operation she received a temporary artificial anus. After this difficult start in life, she has now recovered well and is happily exploring her surroundings. And yet: Feenja has a chronic disease – cystic fibrosis. Despite major advances in therapy and research in recent years, this diagnosis still comes as a shock to many parents today.
“We weren’t prepared for the diagnosis, it came on the evening of Feenja’s second operation. That was simply too much in the wealth of information because Feenja was really not doing well at the time. It was hard for us to grasp what our daughter was doing had to go through up until then and what kind of future awaits her now,” says Björn Henkel, describing the worries about his daughter. In the meantime, Feenja’s parents are looking to the future with hope thanks to the information and self-help offers from Mukoviszidose eV and the good care in their local mukoviszidose outpatient clinic: “We hope that she can lead a reasonably normal life and be able to do as much as possible with other children. And that the medication, which she can probably take from the age of two, works well for her.”
Create attention through action month
Helping those affected to help themselves, promoting research and informing the public about the multi-organ disease is what Mukoviszidose eV has been committed to for over 55 years. The month of action in May, which was launched in 2022, is intended to help raise awareness of the rare disease in a targeted manner. Making cystic fibrosis better known is also a matter close to Lars Hauser’s heart. The 28-year-old educator at the aftercare clinic in Tannheim, where children with cystic fibrosis also spend their rehabilitation, started a charity run in May for the benefit of the association. “I discovered running during the COVID-19 pandemic. In order to reach the milestone of a marathon, I considered running for a good cause as I have matured myself through working with the children at the clinic and can therefore give something back.”, he explains his motivation.
Anyone can take part in the muko.move hands-on sports campaign
A central element of the cystic fibrosis month of May is the hands-on sports campaign muko.move, which takes place from May 17th to 21st. Anyone who would like to help draw attention to the disease is invited. The challenge is: 8,000 hours of exercise are to be collected for around 8,000 people with cystic fibrosis in Germany. Any favorite sport is allowed to participate, whether cycling, yoga, soccer, running or hiking, whether alone or in a team, as a family, with friends or as a company. What counts is the joy of movement and the time spent in movement, not performance, pace or mileage. In 2022, muko.move accumulated 6,545 movement hours – this year the challenge should be completed!
More information about the disease and the work of Mukoviszidose eV
Information and registration for 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. A disruption in the salt and water balance in the body causes a viscous secretion to form in those affected by cystic fibrosis, which irreparably damages organs such as the lungs and pancreas. Around 150 to 200 children are born with the rare disease in Germany every year.
About the Mukoviszidose eV
Mukoviszidose eV networks patients, their relatives, doctors, therapists and researchers. It bundles different experiences, skills and perspectives with the aim of enabling everyone affected to live as independently as possible with cystic fibrosis. In order for the common tasks and goals to be achieved, the non-profit association relies on the support of dedicated donors and sponsors.
Press contact:
Mukoviszidose eV
Carola Wetzstein
Phone: +49 (0)228 9 87 80-22
Mobil: +49 (0)171 9582 382
E-Mail: [email protected]
Original content from: Mukoviszidose eV, transmitted by news aktuell