De Jong, born and raised in Katwijk, lost her father five years ago to a brain hemorrhage caused by Katwijk Disease (officially: D-CAA or HCHWA-D). Her father suffered multiple brain hemorrhages, which made him dependent on his family. “He no longer understood what he saw. He could grab his toothbrush, but he could no longer put the toothpaste on it,” De Jong says in the podcast. “I helped feed him the last leftovers of his dinner because he couldn’t see any left.”
Because Katwijk Disease is a DNA mutation, De Jong has a 50 percent chance of also being a gene carrier and therefore having brain hemorrhages around the age of 50. As a result, all kinds of questions go through her head: “Am I going to have the same future as my father? Will I become ill at a young age? Will I lose myself step by step due to brain hemorrhages, just like my father?”
Having Katwijk Disease affects more than just the carrier. It also influences any desire to have children. If you carry the disease, you can also pass it on.
2023-09-23 08:01:10
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