Home Opinion Pinwheel Day draws attention to rare diseases. More than 700 people suffer from it in the Czech Republic

Pinwheel Day draws attention to rare diseases. More than 700 people suffer from it in the Czech Republic

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Cystic fibrosis (CF) is a serious and incurable hereditary disease that occurs in one in 2500-4000 newborns. It is manifested primarily by repeated infections of the respiratory tract, which gradually lead to fatal lung damage. Patients with CF require lifelong intensive treatment, including daily inhalations and rehabilitation. There are currently about 700 patients with the classic form of cystic fibrosis in the Czech Republic, and many more suffer from atypical forms of the disease.

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“According to a survey conducted by iHETA, the workload of caregivers of patients with cystic fibrosis is comparable to that of caregivers of patients with other serious illnesses, such as advanced cancer or dementia.” says Marketa Mikshikova, Public Relations Manager of the Cystic Fibrosis Club and an adult patient with Cystic Fibrosis.

Why Windmill Day?

“Try making a paper pinwheel and blow it with your breath. This is a toy, right? Blowing paper pinwheels can be a huge problem for people with cystic fibrosis. Their disease mainly affects the respiratory and digestive systems. Lung damage can be so severe that your own breathing may not be enough. Although the number of patients with such a severe health condition is fortunately decreasing thanks to modern medicine, it is still a disease that significantly affects the lives of patients and their loved ones. Patients spend several hours a day on inhalations and rehabilitation, and must also adhere to a strict hygiene regime.” explains Marketa Mikshikov, saying that you can help yourself. How? Make a pinwheel, share the photo on social networks with the hashtag #vetrnikovyden2022 and tell your friends about this disease.

What does CF Club do?

The Cystic Fibrosis Club was created to make life as easy as possible for families suffering from Cystic Fibrosis. Therefore, he provides them with various services and forms of assistance (social worker, psychologist, rental of oxygen concentrators and cough medicines, financial contributions, physical therapy funds, etc.). In recent years, the protection of the interests of patients with cystic fibrosis has also played a huge role, thanks to this advective activity of the Cystic Fibrosis Club in the Czech Republic, the most effective medicines available can be obtained. The CF Club is the only CF patient organization in the Czech Republic.

This year the CF Club is celebrating its 30th anniversary. At that time, the patients themselves, or rather the parents of these children, took part in the birth of the civil association. They have been involved in the management and operation of the CF Club throughout its existence. Of the total number of CF patients in the Czech Republic, 700, more than 500 of them are members of the CF Club.

“The essence of patient organization is also to ensure that people directly affected by this disease know better what kind of help they need. In this way, the services, financial assistance and activities of the CF Club are adapted to the possibilities of treatment and current events. Cystic fibrosis physicians are working closely with the CF Club to provide the best possible care for these patients together.” adds Marketa Mikshikov from Klub CF.

How do you live with such a disease?

The patient’s regimen requires inhalations, rehabilitation, the use of drugs and digestive enzymes. It is also necessary to observe a strict hygiene regime and monitor the state of nutrition. This is why people with cystic fibrosis follow what is called a high-calorie diet. In practice, this means a large time burden for patients and their families. Inhalations and rehabilitation and the cough associated with them also require physical effort for patients. Compliance with a hygienic regimen and a high-calorie diet also requires financial costs.

“Last year, the most modern available treatment, aimed at the essence of the disease, was delivered to the Czech Republic. I must confess that after using this remedy, I was very surprised at how many manifestations of the disease I encountered daily and accepted them as a completely natural part of life. I probably can’t convey to you well enough how hard it is to live daily with bouts of coughing, coughing up disgusting sputum and blood, states of complete exhaustion, shortness of breath, frequent infections and the use of ATP, etc. Of course, this also involves a certain isolation from people with whom you would like to meet, from the things that you would like to do. Everything has changed with the new medicine, now I only cough when I have a cold. By not constantly fighting infection, I also have more energy and can do more activities.” describes Marketa Mikshikova from Klub CF and adds: “Although this is a huge breakthrough in the treatment of cystic fibrosis, this drug is not suitable for all patients. Therefore, the activities of the CF Club continue, and we firmly believe that we will see more new drugs.”

Source: Blesk

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