Cystic fibrosis, also known as cystic fibrosis, is incurable and the most common life-threatening hereditary disease in Belgium. Every ten days, a baby is born with mucosa and with a life expectancy of barely 40 to 50 years. The campaign wants in particular to support research into better treatment methods, which hopefully lead to a complete cure in the long term
Stan van Veen (8): “I have to take 21 pills a day and that is not nice”
© André Verhoeven
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Stan van Veen would love to become a musical actor. Besides dancing and singing, he also swims, runs and cycles a lot, because sports are good for the lungs. “Muco is a disease in the lungs and that is not nice,” says 8-year-old Stan. “I have to take 21 pills every day, aerosols twice a day and three times a week to the physiotherapist. Not fun.”
Stan was just under six months old when he was diagnosed with cystic fibrosis. The disease that leads to digestive problems and a reduced lung capacity with the risk of many infections and inflammations in the lungs puts a lot of pressure on the family of Vicky Wegge and Erwin van Veen. Stan also has a brother Cas, who is three years older. To give Stan all the care he needs, his mom works part-time.
“Muco requires a lot of discipline, both in the treatment and in the precautions you have to take to keep the bacteria out,” says Vicky Wegge. “We have been applying the hygiene rules that corona has taught us for a long time. A cold hits Stan five times harder than we do. He is a good eater and has little trouble with his digestion, but all the more with the mucus in his nose. Fortunately, he hasn’t had to be admitted too often.”
–© André Verhoeven
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no grandpa
The aerosols, the medicines, the visits to the physiotherapist, not being able to participate in some games, for Stan it is often all too much. “It is often a pulling and dragging to get him to take his medication and to aerosol again or to go to the physio, but he knows it has to be done. It’s like snapping a child’s nagging child into the car with the seat belt. Not fun, but you know you have to. We have therefore also made it clear to Stan that mucosa is a life-threatening disease and that if he does not take care of himself, he may not become a grandpa. Or later not be able to stand on stage as a musical star. We think it is important that he learns to deal with his illness himself.”
Stan is doing really well at the moment, but no one knows what will come next. “Until recently, Stan also had to go to the baxter every week for antibodies, but fortunately that is no longer necessary since the new drug Orkambi. His lung capacity has also improved a lot. We hope, of course, for even better drugs to improve his quality of life. Fortunately, studies are underway in Europe and the US with very good results. A lot of money is needed to finance those studies, which is why an action like #mucosocks is so important.”
Lieze Schelkens (24): “It is frustrating to have to wait so long for the reimbursement of medicines”
–© Walter Saenen
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Muco patient Lieze Schelkens has finally been able to keep her own dog since she took part in the study on the new drug Kaftrio. “But as long as Kaftrio is not reimbursed, all those other CF patients cannot fulfill their dreams. That is very frustrating.”
Until recently, Lieze Schelkens from Duffel was involved in all kinds of therapies for five to six hours a day to keep the mucosa under control. An agony, she says. But since she’s in a study of the new drug Kaftrio, she can lead an almost normal life. “I am lucky, but it is a great pity for all other CF patients that Kaftrio is still not reimbursed in Belgium.”
Lieze Schelkens lives from day to day, she says, with full enthusiasm. But that was once different. “Muco clogs up several organs because of the tough mucus, so I’ve been taking a lot of medication since I was 6 weeks old,” she says. “As a child and growing teenager I spent five to six hours a day doing breathing exercises, aerosols and physio to clear my lungs. Sleeping with friends was impossible and I often had to interrupt my game for some kind of therapy. My mom has been out of work for over ten years to take care of me.”
Depression
“Four years ago I was very ill”, continues Lieze. “My lung capacity was less than 40%, I was short of breath and any effort was too much. I was 19 and had already sacrificed so much for my illness, now I wanted to go out and enjoy life like my peers. That killed me. There was even talk of a lung transplant. It was such an agony that I fell into a depression. I couldn’t take it anymore, the idea that a muco patient only lives 40 to 50 years old, ran through my head. Until when I was 21, thanks to professor Stijn Verhulst of the UZA, I was able to participate in the study of the new drug Kaftrio.”
–© Walter Saenen
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Kaftrio is not yet on the market in Belgium, but is described as revolutionary. “I’m very lucky, because since I’ve been in that study, I can lead an almost normal life and finally make my dreams come true. A job? I never thought I could do that, now I work as a nanny. A dog? I couldn’t handle those daily walks, now I play and walk every day with Billy myself. My partner and I even dream of having children, which was also completely unrealistic until recently.”
Lieze finds it terrible that Kaftrio is not yet reimbursed in Belgium – it costs 200,000 euros per patient per year. “Because I’m in the study, I get the medicine for free. But what about all those other mucos who can’t realize their dreams or worse, for whom it is really too late. It’s frustrating that the refund has to take so long, when it’s already been arranged in the UK, US, France and Italy. I understand that cancer gets a lot of attention, but mucoid mucosa is also a life-threatening disease. I hope this #mucosocks campaign changes that and raises a lot of resources for more research into better treatments.”
The #mucosocks collection can be ordered online via mucomove.be and is available in six sizes. A pair costs 10 euros. Famous faces Sander Gillis, Joris Hessels, Leen Dendievel and Maureen Vanherberghen support the action of the Mucovereniging on their social media.
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