Everyday runny nose, chronic cough and frequent operations. Breakthrough device may give Daniela a chance for a better life.

At first glance, it may seem that Daniela is an adolescent individual like any other, but unfortunately the opposite is true. At the age of eleven, she was diagnosed with a severe and incurable lung disease, which affects not only her chess career, but mainly her everyday life.

Primary Ciliary Dyskinesia (PCD)

Primary Ciliary Dyskinesia (PCD) is a rare disease in which the cilia in the respiratory system do not fully perform their function. The disorder of the cilia is congenital, meaning it manifests from birth mainly by repeated or chronic infections of the upper and lower respiratory tract. In adulthood, this disease can lead to possible fertility disorders.

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The most common symptoms of PCD are chronic rhinitis and chronic wet cough. These symptoms are found in up to 97% of children. These symptoms may appear common at first glance, but significant is the fact they appear already from newborn age.

Incorrect or insufficient treatment leads to middle ear disorders with possible hearing impairment. In the long term, this disease can reach a stage where the only possible treatment option is lung transplantation. Unfortunately, doctors cannot completely cure this disease, but they can help the patient by alleviating the symptoms and thereby preventing frequent lung damage. This can be achieved in several ways - inhalation, antibiotics, respiratory rehabilitation, and other aids, which, unfortunately, the insurance company does not cover in the vast majority of cases. These aids also include the Simeox device.

Simeox respirator

The device releases and helps move often dense and sticky mucus from the distal bronchi to the large bronchi, from where it can be easily coughed up. The patient is capable of performing this therapy from anywhere, taking 15 to 20 minutes.

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It works on the principle of gentle vibrations, which act on the chest during exhalation and help to liquefy and release mucus from the respiratory tract. The aim is to improve coughing up and to relieve patients who have a problem with natural mucus clearance. The device is mainly used for diseases that affect the activity of cilia and lead to the accumulation of mucus in the lungs, for example in primary ciliary dyskinesia.

Eleven years without a diagnosis

Many experts agree that PCD is still underdiagnosed in our country, as it is often overlooked in pediatricians' and allergists' offices. This is primarily evident in the age composition of patients with this lung disease. Ideally, the disease should be diagnosed at the latest in preschool age, which is not currently happening, and the diagnosis is made in school-age, when chronic lung changes may already be present, including reduced lung function. This is exactly what happened in the case of Daniela, who was diagnosed with this serious illness at the age of 11.

This period, when a school child should integrate the most into the collective, was the hardest for Daniela. Frequent fatigue, visits to doctors, searching for a diagnosis resulted in frequent absences from school and cutting off from peers.

But after the diagnosis, everything changed, she could finally join the standard operation, but with some limitations. Physical activity is demanding for her and she gets out of breath quickly, especially when running. Therefore, she needs regular sleep and careful medical care to avoid surgeries and improve her overall breathing, vital lung capacity and hearing.

Despite all the problems, Daniela did not give up on sports. Due to her limited physical condition, she decided to go for chess, which became a key part of her life. She achieves great success in playing them. In 2024, she took 2nd place in the Czech Republic Junior Championships, securing her participation in the 2024 Junior World Championships and the 2024 Czech Republic Women's Championships.

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Currently, she uses a saline solution inhaler every day, which helps to dissolve mucus, subsequently she uses a flutter for mucus clearance.

She also uses antibiotics preventively all year round and monitors her blood oxygen level. She does not take lightly all these practices that doctors have prescribed to her. In order to be even more responsible, doctors advised her to use the previously mentioned device Simeox, which unfortunately the insurance company refused to pay for.

The device will primarily help her with much more effective clearing of mucus from lungs by replacing her immobile cilia. At the same time, it will help her avoid further interventions that require anesthesia. She undergoes frequent ear surgeries, as she often suffers from middle ear inflammations.

The Our Lungs Foundation has decided to help Daniela and launched a public collection for this device, which will make her daily life easier. Its annual operation costs tens of thousands. The total amount that the foundation is trying to collect is 173,030 CZK, which will cover all costs of this device and Daniela will have a greater chance of living an adolescent life like any other peer.

Source: author's text, own questioning, Our Lungs, simeox.cz, solen.cz