What is Usher Syndrome?

Usher Syndrome is a condition that causes deaf-blindness. There are three types of Usher Syndrome. The most common types are Type 1 and Type 2. Type 3 is less common.

Type 1: People with Usher Type 1 are born deaf. The vision loss, due to Retinitis Pigmentosa, tends to start around childhood or early / mid teens. The balance system is also affected.

Type 2: People with Usher Type 2 are born hearing impaired. The hearing loss may remain stable or may deteriorate over time. The vision loss, due to Retinitis Pigmentosa, tends to start around mid / late teens or early twenties. The balance system is generally not affected.

Type 3: People with Usher Type 3 are born with normal hearing. The hearing loss is progressive and gets significantly worse as the person ages. The vision loss, due to Retinitis Pigmentosa, tends to start around puberty. The balance system is close to normal.

In all types of Usher Syndrome, the vision loss tends to be gradual. Generally, the earliest symptoms are difficulty seeing in dark and low light situations, glare from bright light and trouble seeing objects to the sides and up and down. Gradually the vision gets worse and becomes very tunneled. However, many people with Ushers retain fairly good central vision for quite a while after the peripheral vision is lost. Eventually, the peripheral vision deteriorates and in some cases, total blindness results.

What does the Ontario Usher Syndrome Association do?

We are people who have Usher Syndrome. We meet once a month, usually at Rotary Cheshire Homes. Intervenors are provided for the meetings. We provide each other with help and support as we deal with losing our vision and hearing. We share information and personal experiences. It can make a big difference being able to meet and interact with others who are dealing with the same type of things. We also advocate for ourselves when relevant issues come up.

How Can I Join The Ontario Usher Syndrome Association?

The meetings are normally every first Tuesday of the month, at Rotary Cheshire Homes (RCH).

If you are interested in joining OUSA or would like more information, please email us.

The contact information is as follows:

Ontario Usher Syndrome Association
c/o Rotary Cheshire Homes
101-422 Willowdale Avenue
Toronto, Ontario M2N 5B1
info@usherontario.ca