At a second glance, however, you will notice that Honza swallows pills before meals and spends several hours every day inhaling. He's battling a rare disease called cystic fibrosis. As he says, the training needed to slow down the disease can be compared to a day of a professional athlete. However, he can also make inhalation more enjoyable, for example, by using the car journey to do it, or by working at it. And the inhalation bar gets everyone... but that's for another time.
Honza inspires us, and since he is certainly not the only one with CF who lives an active life, we want to help. That's why we've decided to give everyone who donates to the treatment and development of CF Hero, a special app that helps young patients with their treatment, a free experience. And it doesn't matter how much you contribute, every hundred or ten crowns counts. We in the office will also be folding.
You've never heard of this disease? Let's review the basic data:
Cystic Fibrosis (CF) or the disease of salty children - facts and figures
- CF occurs in one out of every 2,500 to 4,000 babies born in the country
- Every 27th person in the Czech population is a carrier of a mutation of the CF gene, meaning a healthy carrier. Each of us inherits genes from our mother and father. Due to the type of inheritance, the disease occurs in a child only if both parents are carriers of the genetic mutation. And even then, the child must always inherit the mutated gene variant from the mother and not the healthy gene variant from the father. If the child inherits the mutated variant from one of them and the healthy variant from the other, the child will "only" be a healthy carrier. That's why the vast majority of people who have a CF child have no idea that they are healthy carriers or that such a disease exists...
Diagnosis:
The test for CF has multiple phases.
First, it is suspected in the blood drop tests done right after birth in maternity wards. Tests for CF and other serious inherited diseases have been carried out on every baby born in the country since 2012.Such suspicion can occur in a large number of babies, but it does not mean anything. Cystic fibrosis is diagnosed by a so-called sweat test. It is then confirmed by genetic testing (blood sampling and DNA analysis) and by looking for a specific gene mutation.
CF mainly affects the respiratory and digestive systems
However, other health complications such as diabetes, osteoporosis or diseases of the liver and other organs also contribute. To make matters worse.
Breathing
During the disease, thick mucus forms in the respiratory tract of patients, which limits the natural cleansing ability of the lungs and is a great breeding ground for various bacteria. Some species of bacteria specific to the disease are poorly affected by antibiotics, causing chronic respiratory problems and worsening overall health. Patients must not interact with each other to avoid becoming infected. This means that Honza and others with CF have to inhale for several hours every day to dissolve the mucus and prevent complications. Still, he suffers from frequent coughs and respiratory infections, so he spends time in hospital on drips on a regular basis. He already has his own room there and the nurses know him by name.
Digestion
Because of the malfunctioning of the pancreas, the patients do not thrive and do not gain weight, although when you see them eating you do not understand how this is possible. This means that Honza has to watch what he eats and take digestive enzyme capsules before every meal. He also needs to supplement vitamins and other nutrients with supplements. Newborns with CF can develop bowel blockages soon after birth. Some babies also suffer from prolapsed rectum.
The sweat of CF patients is up to 5 times saltier than that of healthy people.
That's why moms used to know something was wrong when they kissed their babies on the forehead and it was noticeably salty. In the summer, salt crystals can even form on their forehead or near their nose and it is very important to keep an eye on their mineral intake, otherwise complications can arise or even upset the individual's internal environment.
Other signs of the disease
- Common complications of CF include diabetes, osteoporosis, cirrhosis of the liver and other
- CF is currently incurable but treatable
- CF is not a contagious disease, it can only be inherited
- In men, CF overwhelmingly causes infertility; in women, it depends on overall health
Medicine is moving forward
- As medicine gets better, so do new treatments, improving quality of life and extending life expectancy
- However, the average age at death for CF patients is still 25.8 years in the Czech Republic and 28 years in the EU.
If you are interested in more information, please contact the Cystic Fibrosis Club.
CF treatment
As already mentioned, to combat the symptoms of the disease, a demanding treatment plan must be followed every day, which includes:
- Daily inhalations for several hours.
- Respiratory rehabilitation and exercise
- Frequent medication (especially antibiotics)
- A high-calorie diet
- Taking digestive enzymes + vitamins
- Oxygen therapy or lung transplantation as a last resort
CF Hero Personal Coach or make a donation and get a free experience
When you read it that way, it's clear that such a treatment regimen is difficult to follow even for an adult, let alone a child or teenager who would much rather be outside with their buddies than at home breathing inhalation.
When you add to that the fact that the sick are not allowed to socialize and thus share their joys and sorrows, it is clear that it is not at all easy.
That's why Honza and others decided to help. That's why there's the CF Hero app, a mobile coach that teaches young people the habit of inhaling, rehabilitation and generally getting enough treatment in a fun way. It helps them with discipline and the all-important motivation. In the app, each player creates their own character, which they can use the oxygen they inhale to tune up in various ways, buying them clothes and accessories. In addition, various comics and experiments gradually open up to him. The app also connects the sick, allowing them to share anything they can think of with the equally sick. Sounds great, doesn't it? Come along with us, choose the amount you want to contribute to the development of this app and we'll send you a cool free experience in return.
Are you thinking you'd like to contribute but don't have the money to spare? Donate maybe one coffee or a cupcake and send the money to something good instead. You'll get a free experience and it's worth it. Everyone! You decide how much to contribute.It's up to you.
