Living with nystagmus one year on!

[@MTJLT]

I'm glad you've recognized the silver lining for your nystagmus, in that you have a built-in BS-detector for suitors. Apologizing for an insensitive remark doesn't make a man any less insensitive (I feel as though I'm reprising one of my father-daughter lectures of a few years ago). I love your positive attitude toward what could be a disability if you were to let it be so. I like to say that I've been blessed WAY beyond reason by my relative freedom from debilitating issues. Thanks again.

[@britmc22]

Thank you so much for sharing about your life with nystagmus! My son is 10 months old and has it. You answered every question I had and then some! You really put my mind at ease. Your outlook is beautiful and I really admire you for it. Thank you again!! Britney

[@Scimommy]

Thank you for sharing your experiences living with nystagmus. I wish I had your videos when I had a child with CN 11 years ago. I was scared and confused, didn't know what it was or what it meant for her. She is doing great now, thanks in part to our excellent pediatric ophthalmologist. She loves KZbin, so I'll send her the links to your videos - I think she will find them very interesting. All the best to you!

[@pianobooks42]

I think it's great that you're raising awareness like this :)

[@rfjuncky]

Hello my name is ken. i have lived with congenital nystagmus for fifty years now.Thank you for doing these videos.

[@luieu2]

Thanks for sharing this with me , my daughter is 6 has congenital Nystagmus you have helped me so much understanding Nystagmus , your are an Angel thanks !!!

[@cindypeach9808]

Thank you so much for sharing your videos.My eight year son has congenital nystagmus & as a parent, I am trying to learn as much as I can so I can help him succeed in life.He is smart in so many ways.He’s quick & witty & fun loving,but struggles tremendously in school and already in grade 2 is sadly falling far behind. It is hard to get teachers to understand and as he tries to deflect his learning struggles, he is becoming disruptive & is earning the label of “behavioral problem” in class.:(

[@quinny44]

thank you sooooo much, these are my favorite kinds of comments because I feel like ive helped kids out a lot :)

[@quinny44]

So true..... It gives a very raw, and interesting insight into some of peoples uglier natures and sides. I find lots of people can be very naive when you tell them about other peoples reactions. Thank you such a succinct, insightful comment and for watching my video xx

[@lisamayers3625]

Hi Quinny44, just watched this and your first Nystagmus film. I'm just a curious parent plunged into this strange world with strange terminologies when my daughter was referred at 3 months old for a squint and a nystagmus, she's now six months and we're just coming to terms with what all this could mean. So thank you for your informative, down to earth and encouraging videos. God bless you!

[@quinny44]

thank you Britney, stay positive and your son will be a very lucky boy xxxx,

[@quinny44]

ooohhhh, i havent heard of a monocular, but that sounds like such a good idea, I took the train today and for the life on me I couldnt read the signs I needed to badly, and began to panic. This is a fantastic idea, thank you very much and I will definitely include the next time I make a video

[@himaflower]

Thank you for another video. I had forgotten how I was made fun of when growing up. I was a bit of a comic so I made fun of it myself to others so it never became a problem for me. I thought the condition was something special, no one could what I could! (saying that I never could see what others saw ... no video in those days!) Look forward to your next post. Lots of Love :)

[@quinny44]

glad to be of help! x

[@adukebaby33]

You are a beautiful young woman. I suffer from CN as well, and I think the only main challenge that I face is the eye contact. I’ve never been bullied, nor did I have any difficulties of any kind in school. As you stated, every case is different. As for those two guys, it’s there loss.

[@salazarf2]

Thanks again, for a video

[@pianobooks42]

I have nystagmus as well, and I have tools that help me a lot and wondered if this was the case for you too. I use a monocular to read signs (which you mentioned was a problem for you in the last video) and an identification cane so people in cars know I won't see them waving me on. Even though the cane is for identification, it can also help in dark or low-contrast staircases. You said you got your papers enlarged. (I do) Maybe you should do a video about some of these tools?

[@quinny44]

thank you Ken xx

[@Wiggy14]

Hey quinny 44, just watched both your videos and think that what you have said is spot on, I have the same condition but cope fine. I'm 18 and had the opportunity to play football and do athletics at county level bit weird we both did athletics haha all the best Sean x

[@Card789Manipulator]

Check out Meir Schnieder's book "Vision for Life" on Amazon. He's helped many people with their nystagmus and he himself was born with cataracts and became blind after unsuccessful sugeries. He now has 20/60 vision from doing self-healing

[@stronghold429]

I used to get made fun of because of nystagmus all the time.... The most common one being, "can you see me" while moving back and forth to simulate the movement of my eyes, so then I would punch them in the head and I would say, "wow, looks like I can see you just fine." Got into many fights but luckily, something that has helped me tremendously with my eye problem was my martial arts training..... I've been training martial arts since I was 3 and perhaps it can help you as well.....

[@k9storms]

Thank you for these informative videos. I do not have it. I was googling the condition for my pathology class. Apparently Nystagmus can be a condition of Ataxic Cerebral Palsy. Thanks for sharing :) Sharon

[@luieu2]

quinny44 Thanks for your videos , you have helped me alot to understand what my daughter is going through she is 7 and has Congenital Nystagmus !!

[@justindill3219]

People can be rather inconsiderate when it comes to things such as Nystagmus. A lot of people are unaware that is involuntary and above all that it is not correctable. I have a more mild form of Nystagmus in which i have control over it for the most part. I can both force my eyes to start or stop shaking. I honestly feel really bad for people who have less control than I do. If i may ask(If you read comments made on this video from 8-9 months ago) to what extent can you control your Nystagmus?

[@Allassandra]

Having nystagmus is one of the things that I understand so well I have had it since I was 1 month old I would love to trade stories if you like!

[@anmoradi]

Hey, thanks for being brave about it. How do you deal with your nystagmus during social situations where you have to have an eye contact I struggle so much with this, I can't network with people because I look shifty and avoid eye contact and really hurts my confidence even when I have things to say I avoid speaking up because I can't look people in the eye to convey a message, I seem so fake when talking to people they look at me strange, think that I am nervous and shaky person.

[@leahmk93]

i study IT at college and i find that using a computer really helps me. When i was at my secondary school or when i first started at college i had to use a pair of overlay glasses made to the colour that worked for me. what subject r u studying

[@mahrissokf77]

Hi!! IPm 35 year old and i do have congenital nystagus too....I´m susprised that there´s too many people with this same problem...!!! I guess thats very nice...´cos who knows some doctors look at this and try to make some to bring some cure.... I live like anyone...i have this in both eyes...i made some treatment when i was youg like...exercices for my eyes... i can see very clearly,,,whe i was 2 yeas old...the doctor said that i´m be blind...but...it doesn´t happen....:) Big Hug for everyone!!

[@ahmadsaood65]

same story I also have nystagmus in my eyes.....So worried... Some times I cry a lot......

[@hotpinky5895]

"Peter Garret" lol my bad.

[@ben005dr]

hi i like to Know you more :-) you are really beautiful inside and outside... by the way I'm a doctor by Profession and came across a Baby today Having nystagmus searched the net and found you and a cure

[@Retardnatin]

I have mystagmus I had it send I was 2 months old and my optic nerv is all fucked up this made me cry also if you wer me it would be hell because I hate it

[@Goateduzi]

Don't listen to the guys who made fun of you. Just marry me. I have nystagmus also :))

[@hotpinky5895]

omgsh i cant believe those guys made fun of you. Atleast your able to be confident enough to go up to guys and stuff. People stopped making actual fun of me when i was heaps younger. But do you ever get that "point" in a conversation with someone new when it sort of "clicks" that your not just another pretty girl, you have weird eye jiggly movements. Hate that. You sort of see their eyes glaze over. ahhh. I admire your courage to be so upfront with it,

[@ahmadsaood65]

l am 13 and I am facing nystagmus

[@heberarmas5105]

hello quinny44 I send many greetings and a big hug, and you avia written in your previous video but today buelvo acer, am a person who has nystagmus congenital inherits dela on my mother and me is something difisil of comvivir with this evil limited visual as much as we work and study but can be anything because acer has no cure, and glasses helps us good if read my comment as I would like to add you aa facebook and know you a little thanks

[@quinny44]

xxx