Anyone have Retinitis pigmentosa or Usher Syndrome?

hey i know life sucks when things happen that you can't help with. I got US too, diagnosed when i was 15 and it really destroyed my life when I had to stop playing sports because as you get older you compete at night and I couldn't do all the things I use to do when I was younger. Just like you I believe it can be fixed and for people that tell me to stop believing, they can go to hell for having no faith.

Anyways you're smart for taking multi-vitamins and omega fish oil. I take those too. And as for vitamin A causing liver problems, that's only the case if you take too much vitamin A for a long period of time. I was recommended to take about 5,000 to 10,000 IU of vitamin A daily but if i take more than that for a long time, then it'll have side effects. Also, I would suggest you try changing your diet and exercise daily if you hadn't already done these. FOr dieting you wanna stay away from salt, white sugar, soda, junk food, and anything high in sugar and consume 3 to 5 fruits and vegetables a day (nothing new i know lol) and drink lots of clean water. I don't have all the info but you can go to google and look up 'diet and vision' or 'diet for vision improvement' or something like that and read some articles. I been exercising for a long time so that might be why my vision deteriorates slower than it should but i'm gonna start changing my diet cuz it seems reasonable and see if it slows it down even more.
Thank you for post a comment about yourself. Yes, I had a destroy my life since I found it out I has Usher Syndrome when I was 15 and also my dad passed away. I can play sports. I prefer to play Track & Field, Cross Country run, and Swimming. They are safe for me. I didn't want to join for volleyball and basketball team. Because It's hard to see the balls. I had experience with balls hit on my head and face many times. It's very frustrate to me. I forget about baseball. I love to play baseball.

I am taking a multi-vitamins. I don't like to take many vitamins can harm my livers. i am not sure if I have a problem with liver yet. I will figure it out on Sept. I hope it's nothing serious. I stopped taking a Birth Control Pills by my Liver Doctor recommend me stop take it. I stopped take it since last April. I always eating Omega 3. I like eats more than taking too much vitamins for no reason. I know how to do nutrition facts for my diet. I always drinking a lot of water. I always be in faith. I know about the religion. :) I ain't a dumb.

Do you drive? I can't drive. :(
 
No i don't drive it pisses me off. I drove fine when i had my permit for awhile but then doctor recommended that I don't drive :(
 
No i don't drive it pisses me off. I drove fine when i had my permit for awhile but then doctor recommended that I don't drive :(

Same here. I was pissed off either. But I am happy with my husband. He is caring about me. He accepted who I am. He wish I can drive but I don't have a permit license. I can ride on city bus and bike. I hate to depend on people's car for ride. It's annoying and frustrate to me.


I have to wait for Stem Cell Research approve by goverment. Or I can get a bionic surgery for Retina. I'm hopefully! :fingersx:
 
Yeah I know what you mean. I hate relying on others to drive me too. It sucks when my girl isn't able to drive (or pick me up) and I have no way of driving to her. I don't know much about the stem cells thingy but bionic surgery doesn't sound safe since no solution is 100% safe for treating US or RP diseases. I wonder if eye implants is possible lol
 
Yeah I know what you mean. I hate relying on others to drive me too. It sucks when my girl isn't able to drive (or pick me up) and I have no way of driving to her. I don't know much about the stem cells thingy but bionic surgery doesn't sound safe since no solution is 100% safe for treating US or RP diseases. I wonder if eye implants is possible lol

You should check it out for Stem Cell Research link. Just look at my posts. It take 5 to 10 years later. Hey listen. I need to go now. I have many things to do. I will be back soon if I am feeling better.
 
Just my two cents.....



I recently while doing a search for a new "vitamin" online Ocutive and Retinitis Pigmentosa came across this posting from Pinky.... and all of the responses... While I realize this post is very old with it coming up in a search I felt it needed a response.

So here it is Pinky, I myself have RP, I was diagnosed about 8 years old. I am now in my mid 30's. I want to first applaud you for educating yourself about your options. Education is a powerful tool in accepting that you are "different"... However, do not confuse difference as a bad thing. However a few things in your post have me concerned. I feel you have been slighly miss lead on some things. Vitamin A while it is a very good supplement for eye health you can over do it. Please make sure that you are taking this supplement with your orginal vitamin A count being monitored as you can also obtain vitamin A by the foods you eat. It has been shown recently too much vitamin a can be harmful.

However, there are very wonderful news reports coming out about stem cell research and RP. You should do a general search in fact recently within the month prior to me making this post CNN did a story on a research study that used 3 individuals with RP and some vision had been restored however, do not let me miss lead you the study is still very far from becoming main stream medical procedure for those with RP.

I hope your still seeking information and to inform yourself. It is a huge way to over come the obstacles that will await you down the road.

My second part of my post is to the user Aleser... I believe what your trying to say in your post is a "good" thing however, I think your delivery is a little off and you sound very bitter. I agree that anyone with a disability regardless of it must come to terms and learn skills to lead a productive life. However to try and put out the fire of someones hope that they maybe able to one day NOT have a disability I believe is very wrong. For the fire of hope is what drives the ability to change things.

I was diagnosed with RP at the age of 8 or 9 by my family doctor noticing something different with my eyes. I went through all the testing that was able to be provided, I was even a part of an early study done at UCLA, in the mid to late 80's. During my school years I did take braille, orientation and mobility as I got old I learned more household skills ie cleaning, cooking, sewing etc. You can prepare all you want to I am as prepared as I will ever be. However, i was told I would be completely blind with puberty, well I am happy do announce I am not. While I only have 8 to 10 degrees of vision out of 180 I am not dealing with even half a deck, but I refuse to cave into my vision. I know how to use a white cane but I dont use it, I know I should rest my eyes more than I do and I dont. I dont because I fight to keep what I have, its my way of telling my body and my creator I am NOT done. And that it is not time to take it from me... that is HOPE!!!!

That hope was given to me by a friend many years ago who was deaf and told he shouldnt be on a skateboard that he was a danger to himself... he is one of the best skate boarders I have ever met because he pushed himself past his difference.

Bottomline no matter what your disability no one will fight harder for you than YOU... no one will understand more what your capable of than YOU. Never let the norm of anything be what holds you back or down. YOU can do anything you want within reasons of personal safety......

So much of what surrounds any disability regardless of it is what one CANT do... well stop focusing I say on what you cant do and enjoy what you CAN do! Life has many forms dont cave because you cant do what the next guy cant do..... If your deaf... look at is as a plus you cant hear all the gasps when you fall off a bike.. get back up and ride like the wind. When you make a mistake in front of others be thankful you cant hear all the people laughing behind you.... If your blind be thankful that if you put on an outfit that makes you look like you got dressed in a dark room the joke is definately on the person that says it because you were in fact in a dark room.. laugh it off it is their insecurity not yours... if your in a wheel chair be thankful you will never have to run off tripping over a curb an "acting" like you all of a sudden meant to start running at that moment. Life is ALL about how you want to view things.... Continue with hope.. continue to fight.. continue to educate... continue to believe in the ABILITY in you....
 
Usher syndrome/RP

:wave: I have Usher/RP too. I take 15,000 vitamin A, Omega 3, 2000, and Lutein 20mg. My eye doctor said it can slow down progression of vision problems as much as 10-20 years in some people. I have been bullied for tripping over stuff and running into stuff. Bullies are IDIOTS, don't let them get you down. So what if we are a little clumsy, there is no need to be ashamed. I am interested in gene therapy too, but I don't think it is being done yet. Good Luck, Nicky
 
Hello! I'm back and check on my old thread. I want to let you know. I stopped take a Vitamin A supplement since I got pregnant. After I gave my son a born. I heard the news and online about Vitamin A supplement is not good. Because it has a chemical inside. I decided to not take it ever again.

I have to eat a real fruits, vegetables, herbals like nature medicines instead Vitamin supplements.

I have a bad news. My vision is getting slow worse cause worried my husband and everyone. :( I have to wait for new technology to restore my vision to be normal.
 
Hello! I'm back and check on my old thread. I want to let you know. I stopped take a Vitamin A supplement since I got pregnant. After I gave my son a born. I heard the news and online about Vitamin A supplement is not good. Because it has a chemical inside. I decided to not take it ever again.

I have to eat a real fruits, vegetables, herbals like nature medicines instead Vitamin supplements.

I have a bad news. My vision is getting slow worse cause worried my husband and everyone. :( I have to wait for new technology to restore my vision to be normal.

You aren't alone. My vision has degraded much more over the years since this thread.

I am adjusting.
 
Hello! I'm back and check on my old thread. I want to let you know. I stopped take a Vitamin A supplement since I got pregnant. After I gave my son a born. I heard the news and online about Vitamin A supplement is not good. Because it has a chemical inside. I decided to not take it ever again.

I have to eat a real fruits, vegetables, herbals like nature medicines instead Vitamin supplements.

I have a bad news. My vision is getting slow worse cause worried my husband and everyone. :( I have to wait for new technology to restore my vision to be normal.

Yes, I stopped Vitamin A in late 2012 after got terrible diarrhea everyday and aggressive to my IBS.

I just eat fruits with a lot of Vitamin C to boost my immune system.
 
Yes, I stopped Vitamin A in late 2012 after got terrible diarrhea everyday and aggressive to my IBS.

I just eat fruits with a lot of Vitamin C to boost my immune system.

That is why I stopped. The Vitamin supplement's label is misleading. It has a chemical in ingredients.
 
Repost:

There is an education for you about Usher Syndrome.



What Is Usher Syndrome? [NIH Usher Syndrome site]

Usher Syndrome only affect peripheral vision, not vision acuity but some deaf people with Usher Syndrome has poor vision acuity - not related to Usher Syndrome when you have a poor vision acuity (can treated with corrective lens like glasses, contact or LASIK). In later stage, when peripheral vision is gone (tunnel vision), they may need larger print or fonts to read - depending on clients.

I have Usher Syndrome Type II and has normal vision acuity (especially in left eye), so can read and see anything (including pictures) without glasses, but I have lazy eye on right eye (nearsightedness). Even I can still drive as well - not legally blind yet.
 
http://www.tsbvi.edu/component/content/article/132-syndromes/3267-information-about-usher-syndrome

Night Blindness:

Can't see when coming in from bright sunlight
Trips over things when light changes or light is dim
Stays near a light in a dark room or at night
Moves a speaker so light falls on face
May express a desire to enter a room before it is darkened (movie theater, etc.)
Avoids conversations in a darkened area
When walking along a road at night, may appear to stagger or lose balance after an oncoming car has passed
Has problems reading under some lights or in dimly lit areas
Glare sensitive:

Squints and shades eyes in bright lights or fluorescent lighting - complains that the light hurts his/her eyes
Likes to wear sunglasses even in buildings, but especially in bright sunlight
Avoids participating in outdoor sports when the sun is very bright
May appear awkward when exiting from the inside to the outside of a building (when faced with bright light)
Needs contrast:

Has difficulty reading light copies or ditto copies
Often spills when pouring liquids
Can't see stars at night
Restricted field:

Startles easily
Seems to hold eyes in a different direction when looking at some things (because of islands of vision)
Turns head while reading across a page
Uses finger to mark place while reading
Can't find small objects that have been dropped
Fails to glance at another person's handwaving from the side
Bumps into people, tables, and chairs
Stumbles on stairs and curbs
Is quiet in a large group or may edge him/herself to one side when placed in a group
Frequently fails to understand or misses groups instruction. Often relies on friends for information
May appear to ignore others standing by his/ her side
Prefers conversation at distances of 4 to 6 ft.
Problems with visual acuity:

Holds book close to eyes, or bends to read
Places face close to desk while writing
Sits near blackboard
Balance problems:

Can't ride a bicycle
Is considered clumsy
Loses balance easily in the dark
Other:

Frequently last in completing group activities
Exhibits symptoms of anxiousness in new areas
Often last to enter the room
May have some repetitive behavior (seems to do the same things in the same ways, or continues to order the same things at lunch)
May choose to stay home alone rather than be faced with the embarrassment of dealing with a new situation in the dark
May appear unconcerned and may fail to fully participate in groups activities
Frequently hesitates at the top or bottom of stairs (for orientation)
Avoids walking or running in unfamiliar areas, especially when there is bright sunlight or when in a darkened area
Appears to be constantly visually scanning a group
Hearing Loss in Usher Syndrome

Type l

Children are born profoundly deaf or with just a little hearing in the low tones at loud levels of sound.
Most but not all state that hearing aids help only a little or not at all.
Some young children are showing benefit from cochlear implants.
Type II

Children are born hard of hearing with a sloping audiogram so hearing high pitches is harder than hearing low tones.
Hearing aids are effective and most children are mainstreamed.
Hearing loss does not change over many years but may go down with noise exposure or with aging.
When vision gets bad, people think they are losing their hearing but, instead, they are losing the ability to lipread.
 
I was born HoH but became profoundly deaf in 1988 after ear infection due to complication from chicken pox.

I got diagnosed with Usher Syndrome in 2000 when I was 13 years old, but I didn't know until I was 18 years old. I can't remember about lose the night vision, but I do have some degree of night blindness (moderate) and still drive at night sometime with headlight. Having a lot of street lamps make driving extremely easier, but in rural with little or no light, it is completely blind if I don't use headlight.

I'm losing some portion of peripheral vision that cause frequent accidents at work, leading me to resign the job and cannot work in manual labor or any labor that require to have a lot of visual activity. Having many accident incidents are subject to termination (getting fired) and employers didn't give me a special exemption from accident policy, even they didn't have any replacement.

I found that is easier for me to drive in car over movement, stocking in retail store because car is enclosed area since retail store is open space that easily to get into accident if you hit customers or employees.

For me, the retina specialist classified as Type II because I was originally HoH and the degrade of vision for Type II is much slower than Type I. The degradation of vision in Type I start at teen, but Type II - not until adulthood.
 
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