Every night before bed I am afraid of a new lung bleeding

Every night before bed I am afraid of a new lung bleeding

However, this drug costs 24,000 euros per month and has not been compensated (yet) in the Netherlands. That is why I launched a fundraising campaign to be able to pay for the drug. Because Bart doesn’t want and can’t wait any longer.

Fear and stress

I have little or no energy, poor focus and nearly impossible to take care of myself. The anxiety and tension I feel is increasing. Every night before bed, I fear new lung bleeding, which may cause my death.

Here see the constant fear Bart Hamm has to live with. CF hangs like a shadow above everything it does, and CF has now reduced its lung capacity to just 37 percent. For me, this is very difficult mentally. A few years ago I was still feeling fine, I even managed to do some sports with the help of medication. However, all available drugs have been used to control the disease and many of the drugs no longer work properly. Since I was 21, my right lung has been filled with mucus and inflammation to the point where my blood vessels became extremely irritated and burst. Even in the hospital they no longer really know what to do with me.

Many simple everyday things are no longer possible for me. Something that is a piece of cake for a healthy person takes a lot of physical and mental effort. The people around me help me with love, but I wish I could do something myself again, so that those people just don’t have to bother with me.

‘The solution to work’

Promising results have already been achieved abroad with the new “panacea”, Trikavta. This drug could give Bart his life back, but Trekifta still has to be approved in the Netherlands, and only then can it be replaced. “It takes a long time. Without this treatment, I will see my health deteriorate more and more in a short time. It is the last resort. The risk of lung bleeding is getting worse and becoming more common. My lung function also decreases again and again.”

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Lung transplantation is not an option for Bart. After a transplant, lung capacity can be reduced to less than 30 percent. Then I will have less air than I have now. Everything focuses on medicine. People abroad have already been taken off the transplant waiting list, having had a lot of air after using Trikavta.

In America, Germany and the UK, the property light is already greening and is being compensated. Bart: The results of Trekavta are amazing and it can make all the difference for me. This drug gives me hope. We hope for a better life.

Priceless

However, treatment with Trikavta is almost unaffordable if it has to be paid out of your own wallet. Neither I nor my family can do without 24,000 euros per month. But again, I don’t have time to wait for compensation.

This is why I launched a fundraising campaign. Bart: ‘Please people help me and I am very grateful to everyone if they can provide something and donate my treatment. So that I can fight cystic fibrosis. You can breathe again.

Text: Robert Willemson

If you would like to help Bart with a donation, you can visit the website Dondeeractie.nl, help Bart breathe again. The goal is 100,000 euros, which is four months of treatment. At the end of last week, there were already more than 50,000 euros in the account. Henriette Hamm, Bart’s mother, is very happy with this. “At least we can start treatment.”

Cystic fibrosis is hereditary and incurable

Cystic fibrosis is a genetic disease and is not curable. Cystic fibrosis makes mucus very thick throughout the body. As a result, the various organs such as the lungs, pancreas, and genitals do not function properly and the function of these organs deteriorates.

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Common complaints are respiratory complaints such as a lot of coughing, sputum, respiratory infections and growth retardation due to, among other things, poor digestive functioning, decreased fertility (especially in men with cystic fibrosis), and abdominal pain.

About 1,550 people in the Netherlands have cystic fibrosis and about 25 children are born each year with the disease. It is estimated that 1 in 30 Dutch people carry an error in the cystic fibrosis gene. There are many medications to combat the complaints associated with cystic fibrosis, but the average life expectancy ranges between 45 to 50 years for people with cystic fibrosis in the Netherlands and neighboring countries.

There are now some medications – such as Trikavta – that improve the cystic fibrosis protein. They do not correct the cystic fibrosis gene, which is the true cause of cystic fibrosis, but the effect of the cystic fibrosis protein that plays an important role throughout the body, among other things, in mucus elasticity. These medications are expected to significantly increase life expectancy.

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About the Author: Halle Clarke

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