Usher's Syndrome

Dixie

Dixie

Farting Snowflakes
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Anyone here have it?

The reason I have brought this up is because a few weeks ago me and mom got into it again about my hoh and the fact that I walk funny like I have no balance. (I dont know how funny I walk, I just know I walk to get from point A to point B :D )

Well I told her there was probably some legitimate connection somewhere and that my funny walk is out of my control. Turns out I *might* have Usher's syndrome. I feel like I am a textbook case for it. I did not learn to walk until I was nearly two years old, I have always had trouble hearing since I was born (and it seems to have progressively gotten worse to the point of needing aids, but I feel embarrassed to wear them so I don't). Another sign of Usher's syndrome is that the vision isn't as clear as it should be and it progressively gets worse in the late teens and early adult years. This I have noticed. I see fewer stars in the night sky, sometimes my vision is blurred, and I don't see well at night at all anymore, thus I no longer drive at night.

What this amounts to is that the person with Usher's syndrome eventually goes completely deaf and blind sometime in their life and there is no cure for it.

I would like to get tested for it, but I have no medical insurance so right now it is out of the question.

I don't have it as I have not been properly diagnosed, but does anyone here know of someone who has experienced it or may have it as well??

:ty: Dixie
 
I have it although it is very less serious. I still can drive and can see at night as long as there are almost NO pitch black areas. I was diagnosed with US 15 years ago and so far it did not gone downhill from this point so I guess it is a very slow process.
 
I don't have it, but I do have friends who have it.

Sometimes, it can be severe enough to make you legally blind where you can no longer drive a car.

It depends on the percentage of your vision.

A group at NTID hosted a Ushers Syndrome workshop where people wear special glasses and try to walk around and communicate to see what it's like to have Ushers Syndrome.
 
I think it's pretty normal having balance problems depending on your hearing loss in both ears... I know myself if one hearing aid isn't working I will walk like I'm drunk or if I'm standing on one spot I'll trip over or if I'm walking side by side with someone I tend to walk inwards like rubbing against the person cause of my balance... like if you have a bad cold sort of thing... Hope you can find more, please keep looking and get more second opinion... Hang in there!!
 
Dixie said:
Anyone here have it?

The reason I have brought this up is because a few weeks ago me and mom got into it again about my hoh and the fact that I walk funny like I have no balance. (I dont know how funny I walk, I just know I walk to get from point A to point B :D )

Well I told her there was probably some legitimate connection somewhere and that my funny walk is out of my control. Turns out I *might* have Usher's syndrome. I feel like I am a textbook case for it. I did not learn to walk until I was nearly two years old, I have always had trouble hearing since I was born (and it seems to have progressively gotten worse to the point of needing aids, but I feel embarrassed to wear them so I don't). Another sign of Usher's syndrome is that the vision isn't as clear as it should be and it progressively gets worse in the late teens and early adult years. This I have noticed. I see fewer stars in the night sky, sometimes my vision is blurred, and I don't see well at night at all anymore, thus I no longer drive at night.

What this amounts to is that the person with Usher's syndrome eventually goes completely deaf and blind sometime in their life and there is no cure for it.

I would like to get tested for it, but I have no medical insurance so right now it is out of the question.

I don't have it as I have not been properly diagnosed, but does anyone here know of someone who has experienced it or may have it as well??

:ty: Dixie
Click to expand...

It's less serious, also people with US are found from hereditary and changing in vision are progressive, can be worse, normal or nothing but most of people are changing so slower and some people are lucky at no change for long time. I was diagnosed with US in last 6 years ago and isn't full active, also it doesn't get worse and doctor told me that can be get worse in late age or probably never. I believe that they are under diagnose and can be make mistake on some people, also that based on opinion but some of them can be true.

Yup, there's no treatment for US but you need take Vitamin A or Lutein to slow them down or become more less on changing, also they are work on treatment for US, that will release in near future, even studying on something right now. It's true that balance problem can be part of US but it does happen to deaf people due damage in hair cells, mostly happen to profoundly deaf people but for me, I don't have balance problem.
 
I may start popping some vitamin pills as suggested to see if that helps on the vision part after some time and see.

As mentioned before I am completely deaf in my left ear and have reduced hearing in my right ear. Thanks for the advice and support, I'm not one to start flipping out over something I've seen on the internet, but I just wanted some info as it may be undiagnosed. With me living in a rural area, this can have quite an impact as there is no public transportation so it is a necessity to be able to drive. (Trying not to come across as flipping-out.)

I hope to do some more research and find out what I can, and hopefully in the meantime, I can obtain medical insurance so I can get tested to be sure that I don't have it, (hoping that testing is covered).
 
I am deafblind but not with User syndrome, but the symptoms are similar. I have a limited field of vision and I can't see at all in poor light. I use Zoomtext on my computer to enlarge print so I can see it. Plus I find Braille more relaxing. I also use a dog/cane to get about with.

I've found that being deafblind is not so bad when you get used to it. The fear of loosing sight and also depression are a lot worse.
 
The balance could be just your vertigo?

And there are less stars in the sky, actually-- because the cityscape's lights just brightened up the night.

Go and make an appointment with a doctor. do not use this forum for medicial advice-- this sounds serious and we are not doctors.
 
I have always had balance problems, but that could be because I am also legally blind in one eye. I cannot drive at night anymore, either. The glare from the car lights really bother me and I can't tell if I am in between the lines on the road. I suppose I could drive in the dark in an emergency... Just too scary for me, although, I will drive during the day ONLY if it is NOT wet outside!

I do have friends who are deaf with perfect vision who have balance problems...

My best friend has Usher Sydrome and she found out when she was about 7 years old... It can be scary, but if you are informed about it, there are ways you can slow the progress. At least, that is what my best friend tells me. If I were you, I would go to the eye doctor to confirm it and you can go from there. If you want, I can ask my best friend for some websites or support group info and pass it on to you.

I do hope it is just from being deaf as many of us have balance problems. My husband teases me about it because I bump into people all the time... GRR! LOL
 
Serendipity said:
I have it although it is very less serious. I still can drive and can see at night as long as there are almost NO pitch black areas. I was diagnosed with US 15 years ago and so far it did not gone downhill from this point so I guess it is a very slow process.
Click to expand...

Youre right... my deaf adopted daughter has Usher's Sydrome... she is doing fine.... has little cataract... she still drives... she is now 43 yrs old...
 
Thanks guys.

As soon as I can get some insurance of some sort I plan on going to the local eye clinic and get tested.

As for support groups and forums, shoot em' my way. I figure the best thing to do right now is to get educated. I've also decided that this likely a slow process and I still have many years left to enjoy my life.

Thanks for the support.

Dixie
 
Dixie said:
I may start popping some vitamin pills as suggested to see if that helps on the vision part after some time and see.
Click to expand...

I think that you need to research on stem cells for Usher's Syndrome.
Here is one of the links:

http://www.cqcapd.state.ny.us/Danweb/Currentissue/2005/Starting all Over Again.htm

I believe that a stem cell is successful. I am learning about it for my heart instead implanting a pacemaker. I found out that my friend has one and takes 7 different medicines for his heart. I cannot believe it. My doctor did not mention about the medicines. I believe that a stem cell is a positive way to heal that does not require medicines. But, I am still researching it. I wish that Bush should leave us alone.
 
My close friend from Michigan but attend to NTID since, he does have Usher's Syndrome. He's deaf at 8 years old and, started devpole to become blind in his teenager then around 75% blind already now, but he could use the computer if it have special for him to reading it like the letters being huge for him to understand. He says that it don't bother him at all, he's glad that he became deaf first then blind for good reason. And, you could find a way like talk to your doctor to test it and maybe pay monthly? Or they could offer you for free, who knows. I hope you find a way :)
 
well so far Ive not gone blind, but I've still got the occassional blurred vision. I still don't drive at night. If I do have this, like your friend, Sweetheart, I would rather go deaf first then blind. But I'm sure I'll find a way to cope. Right now there is no way no one is going to let me pay it out monthly, I'm already behind on bills as it is. :eek:
 
It might be an option, but I've not done enough research to say yay or nay.
 
My husband's ex fiancee has Usher's. He said that he would have to use tactile signs with her in dark places like nightclubs or restaurants cuz her vision isnt so great. She has tunnel vision so she would need to turn her head to see below, above, left, and right of her while people who have periphal vision dont need to.

I hope u will get insurance so u can get testing done. Have u tried to find out if there are any free clinics that can do it for u?
 
not yet - Ive been busy for the last couple of weeks gearing up for Saturday evening/night. I've done some googling on Usher's Syndrome but I've not seen anything yet about free clinics in my state. (I would go to Oklahoma if I had to since it is the closest state to my house for where I am in Arkansas (I hope that last sentence made sense)

Last Saturday night I just realized how bad my night vision really is - my friend and I were going to Russellville to a party for a friend of ours thats going to Iraq later this month and it was dark. He saw a deer and he's like - did you see that deer? I'm like no - what deer? The deer was right on the side of the road on my side of the vehicle and I never saw it. So just thinking of what could happen if I can't see something like a deer scares the crap out of me, so thus I still stand by my own rule - no night driving for me.

And this week - I've not been hearing as well as I think I should - so there goes a bit more hearing. I had trouble hearing the speaker at the Taco Bell drive thru yesterday afternoon and I *almost* drove up to the window to place my order, but I got it anyhow. I don't know if its sinuses or actually losing hearing, but I do need to go back for another hearing test. I was supposed to have one done back in January but I missed the appt and I never rescheduled. I can probably find a free hearing clinic somewhere close if I did some googling and I can get tested then.

As for insurance, I am considering taking a night job at a meatpacking plant that pays well and offers insurance. The good thing about it is that they have a bus that will meet me at a gas station here in town and take me to work and bring me back to town after work. So hopefully I won't have to drive at night and my gas costs are dramatically reduced. The reason I say a night position is so that I can continue my dog training buisness during the day. I just need some insurance and money to make headway on bills. Night shift pays more so I would be able to get it done quicker.

Thanks for your thoughts and suggestions, I have been looking into them and after this weekend I can go full steam ahead to look at options as to what I can do.
 
I, myself, have U S. I didn't drive last 2 yrs now. My bf helping me alot with lot of things and does frustrate me by making feel like I giving him an extra load. But he never mind that at all. Even, I want to do things like groceries or whatever if he need me for do something for him, which I couldn't. He does not want me to think those things. Comparison, Okla City is easy for me to drive, but in Toledo, is hard, bec close in enviroment, not open like OKC. But I can't see at all at night. And yes, like Centrum vitamins that have lucient in it which slow them down, which doctor has told me to and correct, it does not cure at all and my brother has more serious than I have.
 
Thanks for the post - I've not been taking the vitamins like I should but I plan on going to the drugstore later and get some. Just the thought of not being able to drive in my area would definitely leave me depending heavily on home health and what not to get stuff done. If I do get to that point I'll have to move into town in an apartment and walk my butt everywhere. Though I would rather live out in the country and have plenty of open space and at the same time be independent and go and do as I please.

I have a couple of questions though - how old are you know and how old were you when you were properly diagnosed? Did it progress rapidly for you or more slowly?
 
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