Thank you so much for this sharing your story. It is so informative how you describe the perspective of both the VI child and VI adult. Your accomplishment of your degrees, career, and independent living is so inspiring! I shared your story with my 19 year old son who is also a former micro preemie with ROP (and several other eye conditions and preemie related issues). We have felt so isolated in the whole experience up until this point. No one has ever given us any resources as to how to achieve independence as an adult with impaired and declining vision. Thank you!
Lisa Munda awww thank you so much! I am always happy to help and feel free to ask any questions about anything!! I've been told many times that I'm one of the oldest first ones with ROP that is able to really share and talk about and describe vision aspects of it all so I want to help others, inspire motivate and encourage others with my story
Hi there my name is Sam I live in South Texas Coastal Bend area . I've been legally blind most of my life as well I was born with congenital nystagmus involuntary movement of the eyes I lost all the vision in my right eye due to an eye injury that I sustained at 6 years old also developed glaucoma at a very young age the type of glaucoma is open-angle up until now it has taken most of my peripheral vision so I too have almost no peripheral vision in my left eye. The glaucoma in my right eye is pretty severe the eye pressures are always pretty high they told me that some time at some point in my life I may need to get a prosthetic right eye. I also have developing cataracts astigmatism and myopia I go to my eye doctor and my visual Acuity is usually around 20 / 70 to 20 /100 . I can agree with you when you say that visual Acuity alone doesn't really Define how well a person sees eye doctors use visual acuity basically it's just some kind of measurement system that helps eye doctors determine just how clear you can see however the situation can be so much more different when you're actually out getting around in your environment just because my vision was 20 / 70 during one exam I could walk out of there 30 minutes later I could be worse than that you see I have congenital nystagmus like I said so my visual Acuity fluctuates even if it doesn't always show up in an eye exam it fluctuates day by day sometimes hour by hour I don't know if my opthamologist really understands that or not. I also have depth perception issues because of the eye movement I cannot always find her a curb or a step starts or ends pinpointing the exact edge of a stepper curb is difficult for me I also never use the white cane most of my life but recently has started using one for identification and some very mild Mobility I'm currently using it without any Mobility training cuz I don't really have to depend on the Kane all the time I am considering on getting some orientation and Mobility training in the future should I lose anymore Vision which that is very highly possible. I am also diabetic so that doesn't make things any better you said you were born with retinopathy that seems kind of unusual most people usually get that when they're diabetic there are no signs of it in my case yet but that doesn't mean it can't happen. Anyway thanks for sharing your story I hope to hear from you I hope to get some replies and I hope I can get to know you take care.
bluetech7753 hey Sam! Nice to meet you. Yes I have retinopathy of prematurity which is different than diabetic retinopathy. Feel free to email me at jilliandaigle@gmail.com if you'd like. And yes always happy to chat and get to know people :)
Thank you so much for this sharing your story. It is so informative how you describe the perspective of both the VI child and VI adult. Your accomplishment of your degrees, career, and independent living is so inspiring! I shared your story with my 19 year old son who is also a former micro preemie with ROP (and several other eye conditions and preemie related issues). We have felt so isolated in the whole experience up until this point. No one has ever given us any resources as to how to achieve independence as an adult with impaired and declining vision. Thank you!
Lisa Munda awww thank you so much! I am always happy to help and feel free to ask any questions about anything!! I've been told many times that I'm one of the oldest first ones with ROP that is able to really share and talk about and describe vision aspects of it all so I want to help others, inspire motivate and encourage others with my story
Hi there my name is Sam I live in South Texas Coastal Bend area . I've been legally blind most of my life as well I was born with congenital nystagmus involuntary movement of the eyes I lost all the vision in my right eye due to an eye injury that I sustained at 6 years old also developed glaucoma at a very young age the type of glaucoma is open-angle up until now it has taken most of my peripheral vision so I too have almost no peripheral vision in my left eye. The glaucoma in my right eye is pretty severe the eye pressures are always pretty high they told me that some time at some point in my life I may need to get a prosthetic right eye. I also have developing cataracts astigmatism and myopia I go to my eye doctor and my visual Acuity is usually around 20 / 70 to 20 /100 . I can agree with you when you say that visual Acuity alone doesn't really Define how well a person sees eye doctors use visual acuity basically it's just some kind of measurement system that helps eye doctors determine just how clear you can see however the situation can be so much more different when you're actually out getting around in your environment just because my vision was 20 / 70 during one exam I could walk out of there 30 minutes later I could be worse than that you see I have congenital nystagmus like I said so my visual Acuity fluctuates even if it doesn't always show up in an eye exam it fluctuates day by day sometimes hour by hour I don't know if my opthamologist really understands that or not. I also have depth perception issues because of the eye movement I cannot always find her a curb or a step starts or ends pinpointing the exact edge of a stepper curb is difficult for me I also never use the white cane most of my life but recently has started using one for identification and some very mild Mobility I'm currently using it without any Mobility training cuz I don't really have to depend on the Kane all the time I am considering on getting some orientation and Mobility training in the future should I lose anymore Vision which that is very highly possible. I am also diabetic so that doesn't make things any better you said you were born with retinopathy that seems kind of unusual most people usually get that when they're diabetic there are no signs of it in my case yet but that doesn't mean it can't happen. Anyway thanks for sharing your story I hope to hear from you I hope to get some replies and I hope I can get to know you take care.
bluetech7753 hey Sam! Nice to meet you. Yes I have retinopathy of prematurity which is different than diabetic retinopathy. Feel free to email me at jilliandaigle@gmail.com if you'd like. And yes always happy to chat and get to know people :)
I’m Shayla I was born at 27 weeks I had ROP 3 plus I was the first preemie in Alaska to have the cryotherapy 1989
I have a hard time detail vision
Thank you so much! I have just begun to have eye issues with one eye. It is so comforting to see another person being able to cope.
Lyd your very welcome! Always happy to help! :)
I hope your videos really make a difference in someone's life! Charles Escalon
Mayhem000 thanks Charles!
Where is your Blog?
Rasverix Xyleighraq her blog is wherearethepeas.wordpress.com
Hi, our stories are similar, except for the number of surgeries (I had two). All the best to you!