Geneticists from Radboud university medical center have investigated the hereditary material of 63 members of twelve families. They discovered an aberrant gene: DFNA21. According to the researchers, this gene may cause the cilia in the cochlea to be less well anchored, and as a result of that, less able to transmit sound over time.
13,000 Dutch people
About 13,000 people in the Netherlands have this gene. Because this is noticeable until later in life, the researchers assume that 9,000 people also experience real hearing loss. The discovery of the gene is big news to them.
Victor Beverloo (52) is one of those people. He discovered that his hearing was poor during a conscription test. “I was 19 years old at the time and was rejected because of my hearing. I hadn’t noticed much about it at the time. You don’t know how well others hear, because you don’t have any comparison material,” he tells Editie NL. “However, my father and grandmother were both completely deaf.”
Beverloo was examined by Radboud university medical center in 1997. “Nothing came out, because the technology was not that far yet. Until I suddenly received a phone call three years ago: whether I wanted to hand in blood for a DNA test. A year ago, representatives of various families were asked. discovery. “
A fantastic moment, says Beverloo. “I had accepted that my hearing was poor, but now there is a cause. And even better: can we also work on a solution.”
The Radboud university medical center has asked the group of people to unite. Beverloo is now chairman of the DFNA21 patient association. “We assume that there are still thousands of people in the Netherlands with the same gene defect. Of course you want to reach them.”
Such a patient association can be very effective, says Stephan van Duijn, spokesman for Radboud university medical center. “The group of people with the DFNA21 gene makes up about one percent of the hearing impaired. So it is not a very large group. Such a peer group helps, for example, to raise funds for more research.”
By creating more awareness, more people will be reached with the gene. “Many people may have thought: I worked with machines that were too loud, or listened to loud music. But if you have a father or mother who also became hard of hearing early, it makes sense to see if you have the gene. “