Living with nystagmus - Phil's story

In this video, Phil describes how his nystagmus affects his sight and how he manages with this eye condition day to day.

[ashleynavarro]

My daughter is 7 years old and has to wear glasses since she was 6 months old. She couldnt see us or colors until she got her glasses she still struggled but when she saw me for the 1st time she was nothing but smiles because she was able to put a face to the voice its so hard going through this.

[samaasaleh]

My son has nystagmus due to ocular albinism also, I wish you both the best

[adakdnz]

thank you for sharing your story Phil 🙏🏽

[archenemyfan]

Thank you for your video and the information. My 8 year old son was recently diagnosed with nystagmus and I'm looking for information. I really appreciate your video and story.

[marklittle]

Thanks Phil. I also have ocular albinism. My story is so similar to what you relate. Thank you so much for helping me to explain to people how I experience the world. Over years I have found ways to hide how my condition affects my daily life, which with reflection has led me into conflict in itself.

[blackbird]

I hope Phil is doing better ❤ thanks for sharing ur story Phil

[christophersmith]

My daughter is almost 3 and she has nystagmus to the same degree as the person in this video. When she was first born we thought she would be blind but as she has grown it is very obvious that she can see but we are not sure to what degree. I was happy to hear this persons pov because there is still very much my wife and I do not know.

[Davieis]

Nice upload! I have a similar although neurological condition that affects my vision. This helps me feel better about it.

[nicholaswheeler]

I have nystagmus and ocular albinism too. You are not alone

[ammimilya]

This man is so cute he needs to be married

[Dragonflyy]

Very informative Phil. If I may, And I realize your comment is a little old, so you may not even see my questions, but I was just wondering,
can this eye condition not be surgically corrected? And, I assume there's no "one cure fits all" by the way you explained nystagmus, but sounds as if it's a very treatable condition, and you've certainly found the best strategies that make living life easier for you. That's awesome. Is there any certain cause or reason that brings this condition on? Just asking for someone I know who may be suffering from this, after a
TBI.
Thank You Phil, and
Many Blessings are being sent your way!
🙏✝️💙🙏✝️ 💜

[Corina-dqmy]

I might have this condition. I hopefully will see the eye doctor soon. It happened suddenly. Out of nowhere.

[HeyThisIsRo]

Smartphones help so much with my visual impairment.

[suzaneltahir]

Thank you very much u are hero🌹🌹🌹🌹❤️❤️❤️❤️❤️

[melody_]

Hello! guys... I have the same eye situation since birth and it is very sad and frustrating. And can make me so depress sometimes :( Does anyone here know if there is any surgery or treatment of this kind of eye problem???

[jaderodrigues]

I have this condition and I live in Australia. I’m thinking about having the surgery. Has anyone had it.

[helenhoward]

I feel fortunate. My irises just rapidly oscillate, particularly my left eye although my right is still affected. It's like my vision is rapidly shaky.. I used to get asked about it ALL the time. Whenever I get pulled over, I have to explain to law enforcement I have congenital nystagmus or they suspect I'm intoxicated. I hate glasses, can't stand them, so they're usually on my head vs my face unless I go out. But now I'm back on toric contacts after a 6 year hiatus (after wearing contacts for over a decade). Unfortunately Medicaid refuses to cover contacts, only the bottom barrel glasses lenses. As a child and adolescent, it impacted me a lot more negatively. I was really concerned that they wouldn't permit me to have a driver's license bc it is hard to accurately measure my corrected vision and it's like
... I don't need to be able to read random letters or weird symbols when I drive. I usually know where I'm going, very familiar area, or I thoroughly research my destination on maps or just use GPS.. My best corrected vision is like 20/60 or something. Now as a 33yo, I don't get much crap about it anymore. I still feel socially awkward at times with my null point or nystagmus, especially when I worked in the public sector, people unnecessarily bring it up and I'm like "and...?". When I'm stressed or sleep deprived, it's more noticeable. But fortunately I can get by in the "sighted" world thanks to modern optometry. Without corrective lenses I'm legally blind, things are so fuzzed out that it's hard to discern any detail unless I'm right in front of it. Unfortunately, the peculiarities of CN aren't known in the general population thus it can be really challenging to advocate for myself given the limitations of it. I wish Medicaid would cover my contacts, for instance, as it's not a personal preference over glasses, but the only adequate intervention to correct CN.

[joaoermensongomes]

Em que o nystagmus te atrapalha, por exemplo?? Thanks

[Will-dgre]

I have ocular albinism and have the same problems

[dunstun]

would surgery straiten this mans right eye?