Hi I'm 15 years old and you described me compleatly in this video! i haven't found many videos talking about Aniridia so it was really cool to find this one. i've been thinking about making a video to explain what we see and how we react and live day to day. thank you so much for talking about this i think it was needed most people when i fist meet them think I'm high because my eyes always look dilated which they aren't I'm glad the word is being spread about this topic so thank you!
@KenniGirl6 - A video would be great! It seems to me that it would be helpful for parents of babies with aniridia to better understand what the baby/child is going through, and of course, awareness always helps understanding for everyone. Maybe you could do it for a school project or something. Thanks for sharing that!
I so appreciate the comments from this video; I never dreamed anyone would even watch it other than my teacher! I notice so many of the comment-ers are having a hard time with their disease and I wish I could help. The one thing that came to mind is if anyone reading this has aniridia and has embraced it and moved forward in spite of it...are there things you could pass along which help you cope and grow and live well? Things helpful to you in dealing with the disease? Thanks for sharing.
. I got to be depressed. Since I understand that you all have my own feelings is time to make us feel, and 'bad to know that "disease" is treated just like ours. Now with the internet you can do it all, the countries of North Africa have madea revolution on the web it's time to get a ransom us. Do not you think? Do we really need!
Hi, I'm teen who have aniridia and I can see 1/10 . My life not is pretty but I belive in something of better. I try to be like others but everytime every time I look in the mirror without glasses, I perceive that I am a better person. It also depends on the aesthetic but at the end includes everything ..
I have aniridia two but I'm the only one in my family to have it when I was young my I doctor told me I would be blind by the time I was 8 but I am now 11 and going into the 7th grade and suffering with people making fun of me cause I squint cause all the sun comes to my eyes and I haven't had one pair of glasses so far that have helped me see better :(
@jasminemills3123 Hi Jasmine- be brave. Someone I love has Down syndrome- people stare at her and make fun of her too (just think, every time someone say's "that's retarded" they make fun of people with Down syndrome). But you know what? She is loved and adored by so many people who know her. So if someone makes fun or stares at you, it may be that they don't understand or are just curious. Have you any friends who are also visually impaired? Talking to them might help you feel better. :)
I'm 23 and was born with Aniridia. I have nystagmus, astigmatism, and have no irises. My vision is 20/200 in both eyes and wear glasses to sharpen my vision but it doesn't help beyond keeping things from being blurry. I'm an avid recreational shooter and working on being a gunsmith. Being legally blind does suck but adapting is possible and plenty of programs can help lots of people like these kind of people, you just have to look for them. I'm glad you posted a video on your assignment, it hel
hi i am 22 live in england and born with aniridia. my sight has gone down hill from birth howwver 3 years ago i had an eye infection. with aniridia we can not creat new cells as quick as most people. this ment i was on medication for months, luckly the infection settled down however scared my conear. i am on lots of treatment but still pritty much blind out of my right eye and left eye is going down hill slowly but surely.
i use a white cane, read print size 30 and now learning braille!
Hi I am a 17 year old and I have aniridia.Know being a senior in high school I have to figure out what to do after high school, I have made the decision to join the Marines now the only problem with that is that I may be disqualified because of my aniridia and I just wanted to know if you may have come acrossed anything in your research that said if aniridics are able to serve in the military. If you have please leave a comment telling me what you have found. Thank you and I enjoyed the video.
I feel like I am cursed. No one in my family has it why was I picked to get it. There isn't any cure because it deals with the brain. My family mainly my mom isn't supportive she makes it a daily habit to tell me how worthless I am how crippled and how I will always need someone to take care of me. What's the point of even living this isn't a life.
I am 27 years old and I have aniridia and nystagmus my vision is 20/200 in my left eye and 20/300 in my right eye. I have light sensitivity and I wear contacts which help a lot. It's hard I get depressed maybe every other day how can you not think about the very thing that is keeping you from accomplish very thing that your doing at the moment that you have trouble seeing or doing.
@softspoken0220 Hi- I'm sorry, I just read this today. I can tell you're hurting and I wish I could give you a good reply to help you. Maybe you can't do everything you want to do. But are there things you CAN do which you could help others do? Are there things you like to do that don't require great vision? Capitalize on those things, make a plan. Work toward it. That's really what everyone does with what they have. Find joy in what you are, not what you aren't. God bless you much, Shelley
I am a 31 year old female with Aniridia, I have four boys which my second born was diagnosed with Aniridia as well. You did an excellent job on your pressentation. I always wear sunglasses even at night because alotof people do not understand nystagmus and during the day even inside my work place i wear my sunglasses. It is a rare diesease and I wish more people knew about this so they would understand my eyes more andknow whre I am coming from.
That's a really sad song, but i enjoyed the video. I've grown up with Aniridia, and it's definitely not easy. I think that you bring up an interesting point when you talk about whether or not people with Aniridia can see, as I get asked constantly, and you're right that the answer depends on the individual's condition. You described the light sensitivity well, although my case is not as pronounced, it's still difficult to see in bright sunlight when there are no clouds.
Great Video Shelley!! I am 32 and was born with familial aniridia & nystagmus..I have undergone several sugeries..My right eye has been more severe and endured the most work..I have shunts for glaucoma now in both eyes. I also started developing ulcers on the right eye which led me to having a keratolimbal transplant (stem cals). A great site to also start out at is aniridia.net it is full of resources and if you have any questions I know Jill will help lead you in the right direction.
Great Video Shelley!! I am 32 and was born with familial aniridia & nystagmus..I have undergone several sugeries..My right eye has been more severe and endured the most work..I have shunts for glaucoma now in both eyes. I also started developing ulcers on the right eye which led me to having a keratolimbal transplant (stem cals). A great site to also start out at is aniridia.net it is full of resources and if you have any questions I know Jill will help lead you in the right direction.
I was born with Aniridia and I have Artificial Corneas in both of my eyes and I know of many other aniridics that also have them. That is another thing out there available that is giving us awesome sight. This is a great video and you did an awesome job, your friend is very lucky to have you and there is a huge group of us that support one another on facebook if your friend is interested in meeting other families and parents. Look for Wendy Baum she is apart of Visions for Tomorrow. Good Luck
Hi! Nice video!. I was born with aniridia, nystagmus, astigmatism and cataracts. I don't have any problems with my retina or optic nerve, but I now also have cornea damage. I hope this video helps others understand the basics of this condition.
Hi! I'm 17 & I have Aniridia, & I even learnt a few things from ur video! I have glaucoma & was born with cataracts in both eyes. 1 eye is better then the other & on my worse eye the cataract has grown in the past yr so I used 2 be abe to see 3m but now I see 1.5m & classified legally blind. I'm hopefully getting that cataract removed this yr but its risky with Aniridia as theres a chance the retna will detach. Anyway your research was great & spot on... well done!
Hi- Thanks for telling me your story! I hope they can remove that cataract safely too. I had to cut a lot of things out that I had learned because my video was only supposed to be five minutes long. Thanks so much for your response and God bless you-
Hi I'm 15 years old and you described me compleatly in this video! i haven't found many videos talking about Aniridia so it was really cool to find this one. i've been thinking about making a video to explain what we see and how we react and live day to day. thank you so much for talking about this i think it was needed most people when i fist meet them think I'm high because my eyes always look dilated which they aren't I'm glad the word is being spread about this topic so thank you!
KenniGirl6 6 months ago
@KenniGirl6 - A video would be great! It seems to me that it would be helpful for parents of babies with aniridia to better understand what the baby/child is going through, and of course, awareness always helps understanding for everyone. Maybe you could do it for a school project or something. Thanks for sharing that!
Lampe3178 6 months ago
I so appreciate the comments from this video; I never dreamed anyone would even watch it other than my teacher! I notice so many of the comment-ers are having a hard time with their disease and I wish I could help. The one thing that came to mind is if anyone reading this has aniridia and has embraced it and moved forward in spite of it...are there things you could pass along which help you cope and grow and live well? Things helpful to you in dealing with the disease? Thanks for sharing.
Lampe3178 8 months ago
. I got to be depressed. Since I understand that you all have my own feelings is time to make us feel, and 'bad to know that "disease" is treated just like ours. Now with the internet you can do it all, the countries of North Africa have madea revolution on the web it's time to get a ransom us. Do not you think? Do we really need!
SamStifler97 8 months ago
Hi, I'm teen who have aniridia and I can see 1/10 . My life not is pretty but I belive in something of better. I try to be like others but everytime every time I look in the mirror without glasses, I perceive that I am a better person. It also depends on the aesthetic but at the end includes everything ..
SamStifler97 8 months ago
Also my vision is 20/100 in both eyes
jasminemills3123 8 months ago
I have aniridia two but I'm the only one in my family to have it when I was young my I doctor told me I would be blind by the time I was 8 but I am now 11 and going into the 7th grade and suffering with people making fun of me cause I squint cause all the sun comes to my eyes and I haven't had one pair of glasses so far that have helped me see better :(
jasminemills3123 8 months ago
@jasminemills3123 Hi Jasmine- be brave. Someone I love has Down syndrome- people stare at her and make fun of her too (just think, every time someone say's "that's retarded" they make fun of people with Down syndrome). But you know what? She is loved and adored by so many people who know her. So if someone makes fun or stares at you, it may be that they don't understand or are just curious. Have you any friends who are also visually impaired? Talking to them might help you feel better. :)
Lampe3178 8 months ago
I'm 23 and was born with Aniridia. I have nystagmus, astigmatism, and have no irises. My vision is 20/200 in both eyes and wear glasses to sharpen my vision but it doesn't help beyond keeping things from being blurry. I'm an avid recreational shooter and working on being a gunsmith. Being legally blind does suck but adapting is possible and plenty of programs can help lots of people like these kind of people, you just have to look for them. I'm glad you posted a video on your assignment, it hel
Ruzai 10 months ago
hi i am 22 live in england and born with aniridia. my sight has gone down hill from birth howwver 3 years ago i had an eye infection. with aniridia we can not creat new cells as quick as most people. this ment i was on medication for months, luckly the infection settled down however scared my conear. i am on lots of treatment but still pritty much blind out of my right eye and left eye is going down hill slowly but surely.
i use a white cane, read print size 30 and now learning braille!
roloblog 1 year ago
Hi I am a 17 year old and I have aniridia.Know being a senior in high school I have to figure out what to do after high school, I have made the decision to join the Marines now the only problem with that is that I may be disqualified because of my aniridia and I just wanted to know if you may have come acrossed anything in your research that said if aniridics are able to serve in the military. If you have please leave a comment telling me what you have found. Thank you and I enjoyed the video.
DisturbedBilbo 1 year ago
There is only two low vision specialist and they make me feel like my vision is worse then all other vision problems and how I can't do anything.
softspoken0220 1 year ago
I feel like I am cursed. No one in my family has it why was I picked to get it. There isn't any cure because it deals with the brain. My family mainly my mom isn't supportive she makes it a daily habit to tell me how worthless I am how crippled and how I will always need someone to take care of me. What's the point of even living this isn't a life.
softspoken0220 1 year ago
I am 27 years old and I have aniridia and nystagmus my vision is 20/200 in my left eye and 20/300 in my right eye. I have light sensitivity and I wear contacts which help a lot. It's hard I get depressed maybe every other day how can you not think about the very thing that is keeping you from accomplish very thing that your doing at the moment that you have trouble seeing or doing.
softspoken0220 1 year ago
@softspoken0220 Hi- I'm sorry, I just read this today. I can tell you're hurting and I wish I could give you a good reply to help you. Maybe you can't do everything you want to do. But are there things you CAN do which you could help others do? Are there things you like to do that don't require great vision? Capitalize on those things, make a plan. Work toward it. That's really what everyone does with what they have. Find joy in what you are, not what you aren't. God bless you much, Shelley
Lampe3178 8 months ago
I am a 31 year old female with Aniridia, I have four boys which my second born was diagnosed with Aniridia as well. You did an excellent job on your pressentation. I always wear sunglasses even at night because alotof people do not understand nystagmus and during the day even inside my work place i wear my sunglasses. It is a rare diesease and I wish more people knew about this so they would understand my eyes more andknow whre I am coming from.
appreciated4lyfe 1 year ago
That's a really sad song, but i enjoyed the video. I've grown up with Aniridia, and it's definitely not easy. I think that you bring up an interesting point when you talk about whether or not people with Aniridia can see, as I get asked constantly, and you're right that the answer depends on the individual's condition. You described the light sensitivity well, although my case is not as pronounced, it's still difficult to see in bright sunlight when there are no clouds.
nRand0m 1 year ago
This has been flagged as spam show
Great Video Shelley!! I am 32 and was born with familial aniridia & nystagmus..I have undergone several sugeries..My right eye has been more severe and endured the most work..I have shunts for glaucoma now in both eyes. I also started developing ulcers on the right eye which led me to having a keratolimbal transplant (stem cals). A great site to also start out at is aniridia.net it is full of resources and if you have any questions I know Jill will help lead you in the right direction.
cherish4now 1 year ago
Great Video Shelley!! I am 32 and was born with familial aniridia & nystagmus..I have undergone several sugeries..My right eye has been more severe and endured the most work..I have shunts for glaucoma now in both eyes. I also started developing ulcers on the right eye which led me to having a keratolimbal transplant (stem cals). A great site to also start out at is aniridia.net it is full of resources and if you have any questions I know Jill will help lead you in the right direction.
cherish4now 1 year ago
that is exactly what i have
pool3000 1 year ago
I was born with Aniridia and I have Artificial Corneas in both of my eyes and I know of many other aniridics that also have them. That is another thing out there available that is giving us awesome sight. This is a great video and you did an awesome job, your friend is very lucky to have you and there is a huge group of us that support one another on facebook if your friend is interested in meeting other families and parents. Look for Wendy Baum she is apart of Visions for Tomorrow. Good Luck
DJGiggles33 1 year ago
Thanks. Aniridia Network UK support group has tweeted about this video.
acemcbuller 1 year ago
Hi! Nice video!. I was born with aniridia, nystagmus, astigmatism and cataracts. I don't have any problems with my retina or optic nerve, but I now also have cornea damage. I hope this video helps others understand the basics of this condition.
BlueNeonLites 2 years ago
Hi! I'm 17 & I have Aniridia, & I even learnt a few things from ur video! I have glaucoma & was born with cataracts in both eyes. 1 eye is better then the other & on my worse eye the cataract has grown in the past yr so I used 2 be abe to see 3m but now I see 1.5m & classified legally blind. I'm hopefully getting that cataract removed this yr but its risky with Aniridia as theres a chance the retna will detach. Anyway your research was great & spot on... well done!
brookesheridan 2 years ago
Hi- Thanks for telling me your story! I hope they can remove that cataract safely too. I had to cut a lot of things out that I had learned because my video was only supposed to be five minutes long. Thanks so much for your response and God bless you-
Lampe3178 2 years ago
@brookesheridan I wish you all the best and pray that everything goes fine.
Ukrcossack 1 year ago
So great, Shelley!!!! Very impressive!
lajung 2 years ago