‘From cell to society, on Usher Syndrome
Past, Present And Future’

Prof. Dr. Möller conducts psycho-social research into people suffering from Usher Syndrome. In his homeland Sweden, he has met over 700 families living with Usher Syndrome in the past years.

Sometimes people suffering from Usher Syndrome feel very lonely. Sweden is a large country with relatively few inhabitants. This makes the chance of meeting a fellow-sufferer very small. The risk of becoming isolated is larger. The Netherlands is a small country in which 1000 people suffering from Usher Syndrome live. This does not only make them feel less lonely, also making contact with a fellow-sufferer is often easier because of the traveling distances.

Scientific research into the psycho-social consequences of Usher Syndrome

• People with and without Usher Syndrome show a significant difference in the area of psycho-social health.
  People suffering from Usher Syndrome more often have physical complaints, such as headache, painful neck and shoulders, and they are more often tired. Also tinnitus and having worries and fears are also more often mentioned as associated complaints. Another striking thing is the increased presence of suicidal thoughts, especially with men suffering from Usher Syndrome type 2 between 40 and 50 years old. This may be associated with the age phase of men in which they lose their jobs and become more and more dependent on others.
• Many people experience losing their eyesight as being traumatic. More than the loss of hearing.
• There always is a cooperation between eyesight and hearing. This becomes problematic when this starts to change and the one sense can no longer be compensated by the other. In daily life people have to find other solutions for actions and skills and they become more dependent on others.
• An early diagnosis is essential for the patient and his or her surroundings in many aspects. The more people know about themselves, the disorder and the possibilities, the better they can cope with this.
• Few psychological problems are seen in families that can communicate about it in one way or another.
• There are more factors that play roles in the ways in which people suffering from Usher Syndrome can maintain their quality of life. The possibility to maintain the ability to communicate with the people around is of major importance here.

This is a summary of the presentation of Dr. Claes Möller, ENT specialist/audiologist in Örebro, Sweden. ‘Up to date Usher symposium’ on 28–9–2017 in Lent (Nijmegen, the Netherlands)

Source: ‘Physical and Psychological Health in Persons with Deafblindness that is due to Usher Syndrome Type II’