Introduction: To live with deafblindness can be challenging for many reasons and its implications for communication and information exchange with the surrounding environment can be vast. People with Usher syndrome (USH) constitute the largest group of individuals under the umbrella term of deafblindness. People with USH have a congenital hearing loss to varying degrees and a progressive eye disease, balance is also affected for some. The progressive course of USH means that over the life course the individual needs to adjust to new everyday life situations which could have implications for their health. Aim: The aim was to describe the health of people with Usher syndrome Method: The empirical material employed was based on an extensive survey in which 171 people with USH answered two questionnaires concerning health, anxiety, depression, social trust, financial situation. Results: People with USH in comparison with a cross-section of the Swedish population, reported high frequencies of fatigue, headache, different kinds of pain in back, neck and shoulders, suicide thoughts and suicide attempts. Social problems in terms of being afraid to go out alone, lack of general trust, having no one to share innermost feelings and confide in and having no one to ask for help when needed was revealed. Conclusion: The health of people with USH needs to be understood in a biopsychosocial context, if not there is a risk of reducing the complexity of living with a progressive condition such as USH and a risk of not taking the whole individual into account.