Suffering from Usher Syndrome has a huge impact on your life. You do not suffer from Usher Syndrome on your own. Slowly losing hearing and eyesight also has major consequences for your personal well-being, your family, your friends and your colleagues. It may force you to make far-reaching choices.
In this section you find a number of themes that may support you in your search for possibilities.
Many beautiful and sometimes also touching blogs and stories about personal experience have been written.
CHILD AND FAMILY
How can I support my child who has been diagnosed for Usher Syndrome? How and when do I tell my child? How can I make sure that my child leads an as normal life as possible? How do brothers and sisters cope with this? Should I start a family when I suffer from Usher myself? These are all legitimate and difficult questions for which there are no ready-made answers. It can be a big help to talk about this with fellow sufferers or to read blogs from others about this.
SCHOOL AND STUDY
We have appropriate education in the Netherlands. An increasing number of children suffering from Usher Syndrome can follow regular education with the necessary adjustments. Very many solutions than be found. Which school or study you choose depends on your own interests and capabilities. The possibilities are growing, thanks to the development of technologies.
Many people suffering from Usher Syndrome have (had) a job. You can ask your employer for adjustments at your workplace, such as special computer programs, a workplace in a screened area (so not in an open office space), extra days working from home or support with respect to commuting. In this subsection you can read information about adjustments to the workplace, the WIA process (WIA = income according to labour capacity), allowances and various tips and tricks.
Mobility and independence are major assets. When can you still drive a car and when will this be advised against? In this section we inform you about this. Fortunately, riding a bicycle is often still possible, but as the field of vision narrows down, it will be increasingly complicated to safely move about in traffic. Additionally, the fact that Ushers often cannot hear which direction the sound of the traffic is coming from makes things extra difficult.
The relationship with your partner, parents of other family members can be put under great pressure by the impact of Usher Syndrome. Experience teaches that you never suffer from User Syndrome on your own. It also has an impact on the lives of people around you.
By now, we know that Ushers are ‘high performers’. Driven, adventurous and fond of travelling. Ball sports will perhaps be difficult, but there are other sports that you can do. Here think, for example, of running, rowing, skiing or swimming. Doing sports is healthy and fun, but it is also good to keep stimulating and training balance, which will become more and more vulnerable as the tunnel narrows down.
You can adjust your house to your requirements. Proper lighting and good acoustics are really important here. Also the location of your house can improve your quality of life. Do you live close to facilities, shops and public transport, then you can probably remain independent for a long time.
Also when you are getting older, adjustments and solutions make it possible to keep living on your own for as long as possible. For people who can no longer live on their own there are housing facilities for people with a visual and/or hearing impairment and for people who are deafblind.