Jetske (40) carries the Alzheimer gene: ‘I know what to expect’

This openness entails a risk, she says. “It is soon about my illness, instead of me as a person. It is of course very intertwined, but I do not want people to start treating me as dementia before that happens. That step was taken quickly, from ‘Jetske carries the gene’ to ‘Jetske is already sick’. I’m doing very well now, but yes, I already know what to expect in fifteen years. ”

Alzheimer-gen

Van der Schaar has known since 2014 that she carries the Alzheimer gene, which means that it is one hundred percent certain that she will develop this disease. It’s hereditary. Her mother, uncle and grandfather also got it at a young age. “That is difficult to live with. My peers cared for young children and I took care of my young mother, who I lost while she was actually still there. ”

Van der Schaar finds out that she also carries this gene while her mother is in the middle of the disease process. Confrontational, because her own future suddenly plays out in front of her. “I knew that what she was going through was also waiting for me. I tried to hide this for a long time. It is difficult to deal with a death that you cannot fight against. ”

Prejudices

According to Van der Schaar, people quickly think that she is having a hard time with her fate. Yet that is not so bad. “Of course it took time. It’s not easy, but it also gives me the urgency to live in the now. Unfortunately I cannot adjust my DNA, it is what it is. I enjoy little happiness now and try not to worry too much about later. My mother taught me to be grateful for what I have and taught me that I can handle a lot more than I think. ”

Van der Schaar may be in a difficult position, but she gets strength from putting things into perspective. “It is a nice idea for many people that life can be made and that you are in control. But it is not, for no one. With or without Alzheimer’s gene. An infinite future simply does not exist. And well, before I turn 55, plenty of other things can happen to me that have nothing to do with Alzheimer’s. ”

Future

That is why she does not keep an archive of diaries and video images for later. “I don’t want to live in fear and just fear ‘the moment’.” Participation in a scientific study is her way of thinking about the future. “I am the ideal test subject and I am happy to participate in that. More scientific insight is desperately needed, because prevention is better than cure for Alzheimer’s as well. ”

“I also want to convert something difficult into something beautiful, so that it doesn’t happen for nothing. My book is an attempt to not only make Alzheimer’s understandable, but also a part of life itself. How do you look for happiness, despite the things you are allotted? I think a lot of people would benefit from asking that question. When it’s over tomorrow, are you happy with how you did it today? ”

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