Huntington’s disease is a rare brain disorder in which the complaints keep getting worse and death is inevitable. Due to the unfamiliarity of the disease, there is also a lot of misunderstanding. To change that, vacancy platform Zorgnet Limburg has made a documentary about the hereditary disease.
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“And that is very important,” says Maria Stevens from Brunssum. She has Huntington’s disease and visits the day treatment for people with this condition at the Land van Horne care institution in Weert twice a week.
Drunk
The cause of Huntington’s disease is a deviation from a certain gene. This causes the body to make movements while people do not want to. Furthermore, talking and swallowing can become increasingly difficult. People’s behavior can also change due to the disease. The body then continues to deteriorate until the patient dies. “People who don’t know what it is think I’m drunk,” says the Brunssum patient. “And when you hear people talk about you, it is of course very painful.”
Documentary
Through the patient association, even t-shirts and buttons are available that state that people are not drunk, but ill. It indicates how little is known about this rare disease. Stevens thinks it is important that this changes. She is therefore the lead actress in the new documentary by Zorgnet Limburg. With this documentary, the job vacancy platform not only aims to raise awareness of this disease, but also to make people enthusiastic about working in healthcare.
Not to brake
The numbers show that the disease is rare. There are about 1,700 Huntington’s patients nationwide. “In addition, there are another six to nine thousand risk carriers,” says Joyce Heffels, Huntington project leader at Land van Horne. “These are people who have a 50 percent chance of carrying the disease.”
According to Heffels, symptoms usually start in people between the ages of 35 and 45. “You can see the movements, but it can also have an impact on your cognitive ability and your behavior. After that it takes on average another 15 to 20 years before someone dies. Sometimes it can take longer, but it is impossible to stop the disease. A number of symptoms can be treated with physiotherapy or occupational therapy. ”
According to case manager Tanja Peeters, the disease affects ‘being completely human’. “Both physically and mentally. The here and now is getting harder for them.”
Impact
Stevens was 50 when she first started having symptoms, but she had known for a long time that she would someday develop the disease. “I had myself tested at a young age, but I regret it afterwards. With the slightest complaints I thought that it started. It can start at the age of thirty, but also at the age of sixty. So know that you will ever get the disease. has quite an impact, ”she says. Stevens had children at a young age. Not an easy choice either, she admits. After all, the disease is hereditary. “My daughter was tested and got a good result. My son, on the other hand, doesn’t want to know.”
De Brunssum is also very candid about death. “I have consciously recorded that I want euthanasia if it really doesn’t work anymore,” she says. “My brother also lives here on the ward. He can no longer make this choice himself because of the clinical picture.”
Buddies
Stevens is happy that there is a place like Land van Horne’s Huntington’s Department. “Here you don’t have to explain anything about the disease and you get all the help. It is also nice to have contact with fellow sufferers”, she says. The knowledge center in Weert was developed between 2010 and 2013 into one of the seven ‘Huntington Centers’ in the Netherlands.
Huntingtoncentrum
“Until the early 1990s, Huntington could not be determined with a test,” says social worker Willeke van Mook. “Only then did it become known on the basis of symptoms. In the years before, there were no wards like Land van Horne. Many Huntington’s patients ended up in psychiatry.” The Huntington Center in Weert houses 24 permanent residents. There is also a day treatment for a maximum of eight patients per day. “Here they receive information about the disease and guidance. In addition, we routinely teach them about things to remain independent for as long as possible.”
Chat
One of the patients who eventually switched to the residential group via day treatment is Gaby Joosten from Schinveld. She was 29 years old when she was diagnosed with the disease. “I found it quite difficult at first, but now I try to have a good day every day,” she says. Fourteen years later, the symptoms of the disease are clearly visible in Joosten. Like Stevens, she is also very open about her illness. “People can just have a chat with me,” she says.
The documentary Bart Hölscher made about Maria Stevens and Huntington’s disease, commissioned by Zorgnet Limburg, will be broadcast on L1 television on Sunday 11 April at 10:43 am and will be repeated at 14:27, 16:44, 17:13 and 10:13 PM.
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