The Usher Syndrome knowledge portal has been developed by and for people suffering from Usher Syndrome with the support of their social environments, physicians and scientists.. Stichting Ushersyndroom [The Usher Syndrome Foundation] makes this portal available and hopes that this will fulfil a need for information and knowledge that has existed among people suffering from Usher Syndrome and their families for many years.
Ronald Pennings, MD, PhD, ENT consultant and Usher syndrome specialist formally opens this knowledge portal!
We do our utmost to make the information on this website accessible, readable and nice-looking for everyone. By clicking the ‘eye’ in the upper left corner of the screen you can set your personal preferences with respect to font, size, contrast and voice support.
Via the footer – at the bottom of the page – you can switch between the campaign site and the knowledge portal.
THE USHER SYNDROME
The Usher Syndrome takes its name from the Scottish ophthalmologist Charles Howard Usher.
He saw a link between the congenital deafness and Retinitis Pigmentosa in the year 1914.
LIVE WITH USHER
Suffering from Usher Syndrome has a huge impact on your life and the choices you make in this life. You do not suffer from Usher Syndrome on your own.
Slowly progressing loss of hearing and eyesight also has major consequences for your family, friends and colleagues.
There is no treatment for Usher Syndrome (yet). By means of adjustments, revalidation and good support, people suffering from Usher Syndrome manage to lead lives in reasonably independent ways.
There is no treatment yet that can stop or slow down the deterioration of both hearing and eyesight. There are, however, really hopeful developments. Apart from sharing knowledge , Stichting Ushersyndroom also wants to stimulate scientific research.
In this archive you can find a wealth of articles, media presentations and personal stories of people suffering from Usher Syndrome and their relatives.
The double sensory impairment requires a specific approach. This makes cooperation and sharing information essential.
USHER AWARENESS DAY
Every year on the third Saturday of September, we celebrate ‘International Usher Awareness Day’. On this day, which falls on the same day as the autumn equinox, the sun is directly above the equator and the day and the night have the same length. Following the autumn equinox, there will be less light every day; days get shorter and nights get longer.
The autumn equinox is the ultimate metaphor for the Usher Syndrome, because this experience of seeing increasingly less light is an irreversible process for people suffering from Usher Syndrome. The light-sensitive eye cells that have died in the eyes and the cilia in the ears will never come back.
Being diagnosed for Usher Syndrome is a frightening experience.
Therefore we want to make Usher Syndrome known around the world and so create a better understanding of the impact of getting both deaf and blind. Besides, everyone in the world must know that people suffering from Usher Syndrome are remarkably driven and well-motivated to keep participating in society. #USHDAY
As a patient you also bear a part of the responsibility yourself for this unravelling of and treatment for Usher Syndrome. Therefore register for the CRUSH database of the National Usher Syndrome Expert Centre in the CRUSH DATABASE Radboudumc (Nijmegen, the Netherlands).
The development of the knowledge portal is still in full swing. Do you have interesting information, a nice blog or any tips? Please let us know through e-mail.
In the agenda you can see the dates of Usher cafés, lectures, symposiums or other relevant meetings.
By registering for the Stichting Ushersyndroom newsletter you can stay updated about all our activities.