New:possible usher's syndrome


New Member
Hi, I just found this site today while hunting for a forum on Usher's Syndrome. I was reading a blog post from Lipreading Mom last week. She had a special feature from someone who was HOH and blind. It was very interesting for me since I am HOH and losing my vision rapidly. She also mentioned balance issues (another issue of mine).

So I started researching. I thought I would post here in case someone had any suggestions or ideas. Here's my story...

I am about to turn 50 yrs old. Since I was a young child, I had vision problems. Not too bad when young but worsening as I got older. I was in bifocals by age 25 (very embarrassing). By 30, I was in trifocals.

By my early 20s I started losing my hearing. I also began to have balance issues but not that badly. As I reached my 30s my hearing was bad enough that I had trouble with background noise and word discrimination. By early 40s I had to wear aids. Now they really don't help much. It is mainly word discrimination that is harder for me.

About 4 yrs ago I started losing my ability to see certain colors. I can still see some but only those that are very clear. I can tell some shades - like it is some type of red or blue but not exact color. LIke I can't always tell between red and orange.

Now my vision continues to worsen faster than my hearing is. I am a visual learner. I have to be honest that it scares me to death. I'm not sure how to handle it. What really gets me is I am in my internship for my masters in counseling. It is getting harder for me to hear everything my clients say. This makes me mad. I have worked my butt off earning this degree. Then my hearing and vision goes haywire faster than ever.

Then there is my balance. Some days I can't even walk across the room straight. I stagger like a drunk. I have to use a cane. Other days I am fine with only a little wobbling. I can't count the number of times I have fallen. I messed up my back falling on the stairs one time. I couldn't judge the distance and slipped.

Professionally, I am a speaker and a writer. I teach classes to adults on various topics like leadership, communication skills, and health. Needless to say, this is becoming harder with the hearing.

I don't mean to sound whiny, but these things are becoming so bothersome I don't know what to do. When I read that post from Lipreading Mom, I was like...'Could this be the answer to why this is happening??' I know my grandfather had hearing and vision issues. Just not sure what. My father was born blind (I was told) but had surgery to restore his vision.

I have an eye appt with an ophthalmologist this coming month. I would love suggestions as to what to ask him about.

BTW, I do know sign. It's just been a while since I used it regularly. I am not around any Deaf people f2f. I have some friends online. I have a degree in Deaf Education but haven't taught in a school in forever. I don't like my worsening hearing but I can deal with it. It is my eyes that really get me.

I have been blind as a bat at night for about 5 or 6 yrs. It is so now I do not drive at night. I know they will legally withdraw that privilege next time I renew my license. My side vision is getting narrower.

Ok, enough. I did say I was a writer. I tend to be long-winded. I hope you can have some suggestions.



Old Deaf Ranter
Premium Member
I have the same from two separate syndromes, so you don't know for sure what the cause is until it is evaluated, but Retinitus Pigmentosa is what causes the vision difficulty for Usher's patients, so it should be easy for your opthamologist to tell if that is your problem.