Huntington’s disease is a rare brain disorder in which complaints worsen and death is inevitable. There are also a lot of misconceptions about the unfamiliarity of the disease. To change that, the vacancy site Sorknet has produced a documentary on hereditary disease in Limburg.
“That’s very important,” says Maria Stevens of France. He has Huntington’s disease and visits Land Van Horn Care in Ward for day treatment for those with this condition.
The cause of Huntington’s disease is a deviation from a specific gene. As a result, the body begins to make movements when people do not want to. Also, speaking and swallowing will become increasingly difficult. Disease can also change people’s behavior. The body continues to deteriorate until the patient dies. “For those who don’t know what it is I think I’m drunk,” says the French patient. “When you hear people talking about you, it’s very painful.”
Through the Patient Association, T-shirts and buttons are also available that claim people are not drunk, but sick. This indicates how little is known about this rare disease. Stevens thinks it’s important to change that. So she is the lead actress in Sorgnet Limburg’s new documentary. Through this documentary, the job vacancy platform aims not only to raise awareness about the disease, but also to motivate people to work in the health sector.
Do not brake
Numbers show that the disease is rare. There are approximately 1,700 Huntington’s patients nationwide. “In addition, there are six to nine thousand more risk carriers,” says Joyce Heffels, Land Van Horn’s Huntington project leader. “They have a 50 percent chance of carrying the disease.”
According to Hefels, symptoms usually begin between the ages of 35 and 45. “You can see the movements, but it also affects your cognitive ability and your behavior. After that it takes an average of 15 to 20 more years for a person to die. Sometimes it can take a long time, but it is a disease that cannot be stopped. Many symptoms can be treated with physiotherapy or occupational therapy. Can. ”
According to case manager Tanja Peters, the disease affects ‘being completely human’. “Physically and mentally. It’s getting harder and harder for them here and now.”
Stevens was 50 years old when he first began to show symptoms, but he had long known that he would one day develop this disease. “I tested myself at a young age, but I’m sorry. I thought it started with a few complaints. It could start at age 30, but it could start at age 60. So be aware that you will occasionally get the disease, which is very impactful,” he says. Stevens had children at a young age. Not an easy choice, she agrees. After all, the disease is hereditary. “My daughter was tested and got a good result. On the other hand, my son didn’t want to know.”
De France is also very honest about death. “I have emotionally recorded that I would have euthanasia if it didn’t work anymore,” he says. “My brother also lives in the ward here. He can no longer make this choice because of the medical film.”
Stevens is delighted to have a place like Land von Horn’s Huntington Department. “Here you do not have to explain anything about the disease, you get all the help. It is better to communicate with fellow patients,” he says. The Knowledge Center at Wert was created between 2010 and 2013 as one of the seven ‘Huntington Centers’ in the Netherlands.
“Until the early 1990s, Huntington could not be determined by an experiment,” said social worker Willek van Mook. “Only then did it become known in terms of symptoms. In previous years, there were no wards like Land von Horn. There are 24 permanent residents at the Huntington Center in Wert. There is also a day treatment for a maximum of eight patients a day.” Here they get information about the disease and guidance. In addition, we usually teach them how to be as independent as possible. “
One of the patients who switched to the residential group through day treatment was KP Justin of Shinwelt. He was 29 years old when the disease was diagnosed. “I used to be very hard, but now I try to have a good day every day,” he says. Fourteen years later, the symptoms of the disease are clearly visible in Justin. Like Stevens, she is very outspoken about her illness. “People can chat with me,” he says.
The documentary Bart Holscher, produced by Maria Stevens and Huntington’s disease, commissioned by Jorgnet Limburg, will air on L1 Television on Sunday, April 11 at 10:43 am, and again at 14:27, 16:44, 17:13 and 10:00 pm.