Hi thank you for making these videos, they really inspired me. I am visually impaired and I was born with cep to optic nerve dysplasia. They told me the same thing and I'm 22 years old and still alive.
I was born early to but not as late as you were born I was born @ 27 weeks .... I had the condition in premature babies called ROP retinopathy of prematurity also called terry syndrome- or medically known as Retrolental Fibroplasia I had the threshold type that required emergency surgery to stop blindness- it was stage 3 with plus disease I was born in 1989 and in Alaska that’s where I live I had back then it was called “experimental” retina surgery- called Cryotherapy- I was the 1st preemie of Alaska that had it done and it worked to save my vision I do however have vision loss some tunnel vision and details are hard to see and stuff .... I had lazy eye and a lot of eye muscle surgeries- 5-6 eye surgeries- but the retinopathy surgery at 3 -4 months old - I had a 50/50 chance of becoming total blind but thankful I have sight 💜
AKA Sam , I really appreciate you sharing your story. I too am visually impaired and have been since childhood I developed nystagmus after having head trauma as an infant I fell over the side of my parents bed landing on the concrete floor hitting my head pretty bad doctor said I was going to be mentally disabled however that was not the case but I did develop nystagmus I also have no peripheral vision totally blind in my right eye that was due to another traumatic injury to that I when I was 6 years old I too also have glaucoma. I am not totally blind I do have some usable eyesight but I still have trouble seeing things I cannot read small print without magnification I have depth perception issues such as not knowing where steps end or start and curbs are another problem when I'm out and around I cannot even read street signs from one corner of the intersection to the other I have to use a monocular to read things from far away or if I'm finding an address to a specific location unless if the numbers are gigantic other than that I won't see them.
Furthermore, the cryotherapy isn’t working and premature babies are loosing sight - but there’s always hope that 1 day the surgery will work again the treatments are given but the eyes don’t always respond with good outcomes- I wish that you keep doing tour best and maybe could you make a video about cane travel ? Also due to eye pressure I have the it removed to prevent “Suspected” but I do not have it I was suspected I might develop Narrow angle glaucoma- but I didn’t get it which I’m glad but I had my pressures stopped in my eyes and get checked often to make sure my optic nerves are ok
Thanks for sharing your experience, I wish you all the best. I think I am also a Cytomegalovirus carrier and would like to ask some questions. How old is your mum? Is she going to go blind when she is older? Does she get eye 'floaters' or specks in her vision? And did she have yellow eyes when she contracted Cytomegalovirus?
Ok. I just heard that cmv can reactivate when a person gets older and cause blindness. I am sighted at the moment but worried I may go blind one day.. I am 24. Keep me posted. Peace.
Your videos make me smile. It's so awesome to hear someone else's story, their journey. Keep up the good work!
Mjohnson409 thank you so much. Im glad to know you enjoy them.
Hi thank you for making these videos, they really inspired me. I am visually impaired and I was born with cep to optic nerve dysplasia. They told me the same thing and I'm 22 years old and still alive.
Lissa Calvo thank you so much. I really appreciate you watching! Im glad to know that the doctors were wrong about you too!
I was born early to but not as late as you were born I was born @ 27 weeks .... I had the condition in premature babies called ROP retinopathy of prematurity also called terry syndrome- or medically known as Retrolental Fibroplasia
I had the threshold type that required emergency surgery to stop blindness- it was stage 3 with plus disease I was born in 1989 and in Alaska that’s where I live I had back then it was called “experimental” retina surgery- called Cryotherapy- I was the 1st preemie of Alaska that had it done and it worked to save my vision
I do however have vision loss some tunnel vision and details are hard to see and stuff ....
I had lazy eye and a lot of eye muscle surgeries- 5-6 eye surgeries- but the retinopathy surgery at 3 -4 months old -
I had a 50/50 chance of becoming total blind but thankful I have sight 💜
AKA Sam , I really appreciate you sharing your story. I too am visually impaired and have been since childhood I developed nystagmus after having head trauma as an infant I fell over the side of my parents bed landing on the concrete floor hitting my head pretty bad doctor said I was going to be mentally disabled however that was not the case but I did develop nystagmus I also have no peripheral vision totally blind in my right eye that was due to another traumatic injury to that I when I was 6 years old I too also have glaucoma. I am not totally blind I do have some usable eyesight but I still have trouble seeing things I cannot read small print without magnification I have depth perception issues such as not knowing where steps end or start and curbs are another problem when I'm out and around I cannot even read street signs from one corner of the intersection to the other I have to use a monocular to read things from far away or if I'm finding an address to a specific location unless if the numbers are gigantic other than that I won't see them.
bluetech7753 thank you for sharing your story with me Sam! I wish you the best of luck!
You are wonderful ❤
Thank you so much for telling your story. 🦋
Furthermore, the cryotherapy isn’t working and premature babies are loosing sight - but there’s always hope that 1 day the surgery will work again the treatments are given but the eyes don’t always respond with good outcomes- I wish that you keep doing tour best and maybe could you make a video about cane travel ? Also due to eye pressure I have the it removed to prevent “Suspected” but I do not have it I was suspected I might develop Narrow angle glaucoma- but I didn’t get it which I’m glad but I had my pressures stopped in my eyes and get checked often to make sure my optic nerves are ok
I was born six months premature which caused by retinopathy of prematurity which in turn caused my glaucoma
I am also visually impaired I have something called retinal dystrophy I'm losing my central vision I'm 20/80 in the left and 20/40 in my right
Thanks for sharing your experience, I wish you all the best. I think I am also a Cytomegalovirus carrier and would like to ask some questions. How old is your mum? Is she going to go blind when she is older? Does she get eye 'floaters' or specks in her vision? And did she have yellow eyes when she contracted Cytomegalovirus?
Hi! My mom isn't blind, only I am blind. My mom is sighted!
Joe Patton my mom was pregnant with me when she contracted the virus. Feel free to ask me any questions.
Ok. I just heard that cmv can reactivate when a person gets older and cause blindness. I am sighted at the moment but worried I may go blind one day.. I am 24. Keep me posted. Peace.
Thanks for this video I have RP
again thank you , can you do more videos for us?
@@MargieSandersflower I am definitely planning to make more videos! Thank you for watching!
@@taylorellis3093 thank you, am so excited!
I am also visually impaired sense birth