Sleep problems in patients with Usher syndrome appear to be part of the disease

Researchers used to think that people with Usher Syndrome have problems sleeping because they see and hear less and therefore experience tension. Researchers at Radboud university medical center think that this is not true. Sleep problems may be part of the disease.

Patients with Usher syndrome are born deaf or hard of hearing and then see less and less. The severity of the disease is determined by the type of Usher syndrome. Four types are now known. Many patients have sleeping problems. ‘Fatigue is often seen as a consequence of the double sensory impairment,’ says researcher Erwin van Wijk. Erwin is head of the Usher syndrome and hereditary hearing loss research group. ‘Because if you see poorly or no longer at all, you lose the visual day and night rhythm. That has consequences for the quality of your sleep.’

Research into poorer sleep in people with Usher Syndrome

‘It was striking that a lot of patients suffered from sleep problems and fatigue,’ says Erwin. ‘We found that interesting. Was there perhaps something else going on?’ The researchers asked 56 patients with Usher syndrome type 2A to complete questionnaires. This showed that these patients did indeed sleep poorly more often than the control group. The quality of their sleep was worse and they were tired more often during the day. But the most striking thing was that the sleep problems were not related to the severity of the visual impairment. Erwin: ‘This means that the sleeping problems are not caused by patients having poor eyesight. Patients who see well also have sleep problems. So it seems that sleeping problems may be a feature of Usher’s syndrome.’

Solution for sleeping problems

If it is proven that sleeping problems are indeed part of the disease, a solution can be sought. ‘At the moment sleep problems are not included in the treatment for Usher syndrome, because it is not a proven feature of the disease. As a result, research in a sleep clinic is often not reimbursed by the health insurer. Treatment of sleep problems can definitely improve quality of life.’

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