Huntington’s disease is a rare brain disorder in which complaints get worse and death is inevitable. Due to lack of familiarity with the disease, there is also a lot of misunderstanding. To change that, the vacancy platform Zorgnet Limburg has made a documentary on the genetic disease.
“This is very important,” says Maria Stephens of Brunssum. She has Huntington’s disease and visits a day treatment for people with the condition at the Land van Horne care institution in Weert twice a week.
Huntington’s disease is caused by a deviation from a specific gene. As a result, the body begins to make movements while people do not want to. Moreover, speaking and swallowing can become increasingly difficult. People’s behavior can also change due to illness. Then the body continues to deteriorate until the patient dies. “People who don’t know what it is think I am drunk,” says a Brunsom patient. “And when you hear people talk about you, it hurts very, of course.”
Through the Sick Society, even T-shirts and buttons are available stating that people are not drunk, but sick. It indicates how little information is available about this rare disease. Stevens thinks it’s important for this to change. She is therefore the lead actress in the new documentary Zorgnet Limburg. Through this documentary, the job vacancy platform not only aims to raise awareness of this disease but also aims to get people excited about a career in healthcare.
Do not brake
The numbers show the disease is rare. There are about 1,700 Huntington patients across the country. “In addition, there are six to nine thousand other risk carriers,” says Joyce Hefels, the Huntington Project Leader in Land Van Horn. “These are the people who have a 50 percent chance of getting sick.”
According to Heyvels, symptoms usually start in people between the ages of 35 and 45. “You can see the movements, but they can also have an effect on your cognitive ability and behavior. Then it takes an average of another 15-20 years before someone dies. Sometimes it might take longer, but it’s impossible to stop.” Disease: A number of symptoms can be treated with physical therapy or occupational therapy. ”
According to case manager Tania Peters, the disease affects “completely human beings”. “Physically and mentally. Here and now it is getting harder for them.”
Stevens was 50 when she first started showing symptoms, but she had known for a long time that she would one day get sick. “I tested myself at a young age, but I regret it then. With the slightest complaint I thought it started. It could start at the age of thirty, but also at the age of 60. So I know you’re going to get it and say the disease has a huge impact. Stevens had kids.” At a young age, she admits, it’s not an easy choice. After all, the disease is hereditary. ”My daughter was tested and got a good result. But my son, on the other hand, does not want to know. “
De Brunsum is also very vocal about death. “I have consciously registered that I want euthanasia if it no longer actually works,” she says. “My brother also lives here in the ward. He can no longer make this choice on his own due to the clinical picture.”
Stevens is happy to have a place like the Huntington Division in Land Van Horn. “Here you do not have to explain anything about the disease and you will get all the help. It is also good to be in contact with colleagues who are struggling,” she says. The Weert Knowledge Center was developed between 2010 and 2013 into one of the Seven Huntington Centers in the Netherlands.
“Until the early 1990s, Huntington could not be determined by testing,” says social worker Williki Van Mock. “Only then did it become known on the basis of symptoms. In previous years, there were no wards like Land van Horne. The Huntington Center in Vert housed 24 permanent residents. There is also daily treatment with a maximum of eight patients per day.” Here they receive information about the disease. And instructions. Plus, we routinely teach them about things to stay independent for as long as possible. “
One of the patients who eventually switched to the residential group by day treatment is Gaby Joosten from Schinveld. She was 29 years old when she was diagnosed with the disease. “I found it very difficult at first, but now I try to have a good day every day,” she says. Fourteen years later, the symptoms of the disease were clearly visible in Joosten. Like Stevens, she is also very open about her illness. “People can only chat with me,” she says.
Bart Holcher documentary on Maria Stevens and Huntington’s illness, commissioned by Zorgnet Limburg, will be broadcast on L1 TV on Sunday April 11th at 10:43 am and will be played at 14:27, 16:44, 17:13 and 10:13 pm.