who has ROP?
Posted by msk5 on 11/28/2009 at 1:24 PM
hey there its jillian! anybody have ROP? i am curios to know, i would love to know what youve gone thru and any surgeries you have and stuff. i am 18 and having a huge problem with it and am looking for anybody else who has it ive never met anybody before with the same thing. if you do have it, whats your vision like? how old are you right now? what surgeries have you had? i dont mean ro pry or be nosy i just always wanted to meet a friend with the same thing :)
There are currently 13 replies
Re:who has ROP?Posted by Windows7 home on 11/28/2009 at 2:29 PM
I actually have Leabers.
Re:who has ROP?Posted by msk5 on 11/28/2009 at 4:00 PM
Re:who has ROP?Posted by Windows7 home on 11/28/2009 at 4:06 PM
An I condition.
Re:who has ROP?Posted by beccawhizkid on 11/28/2009 at 4:10 PM
For anyone who said it-I actually research Leber's (formally Lebers congenital amurosis). There is alot of hope for that disorder right now there have been over 20 clinical trials that improved the vision of people. I dont know anyone with ROP though. As soon as you said it I had to look it up. I have some rare thing that no one has ever heard of-get a kick out of the name Autosomal Recessive Complete Congenital Stationary Night Blindness (lol what a mouthful)
Re:who has ROP?Posted by Windows7 home on 11/28/2009 at 4:17 PM
Wow! I'll have to tell ELizabeth, cause she has that too!
Re:who has ROP?Posted by msk5 on 11/28/2009 at 4:19 PM
what is that exactly? sorry the long name made me laugh that is a mouth full! ROP is retinoapthy of prematurity i was born with it and its when blood vessels and such in the eye dont grow right and are not fully developed cuz i was born very very early, basicly my retnas keep detaching it sucks bc i keep having surgery and i hate it, just had one on monday :(
Re:who has ROP?Posted by beccawhizkid on 11/28/2009 at 5:03 PM
arCSNB1A is when certain cells in my retina dont work so no information is sent to my brain about darker things. The less light there is, the less my eyes work. Because of the defect in my retinas, a bunch of other stuff went wrong when my retinas developed. If there are low contrasting things I cant see them so I need to use a cane all the time instead of just at night. I also had other side effects like nearsidedness and strabismus. My retinas havent detached yet but because they arent formed the right way there is more of a chance.
Re:who has ROP?Posted by Music fan24 on 11/28/2009 at 5:35 PM
Hey Jillian! it's paulina i actually have R O P and i only whent threw surgeries as a baby and i'm now 16 and have light perseption and can see shadows i also don't have a lens so i don't get shapes just an outline hope this helps
Re:who has ROP?Posted by msk5 on 11/28/2009 at 5:49 PM
hey paulina! wow your lucky girl! i mean i know the vision is bad but your lucky that your not having to go thru surgery after surgery to reattach your retnas. ive had six in the past year and need at least one more because the surgery i had on monday is a two part surgery, and its kinda scary because even though i have never really used my bad eye, its always had something weather its just light, shapes or fuzz and this is the last try to save it before it all goes. its so stressful i am at the retna specielist at least once a week, and its 2 hrs away from my house so im always missing school lately. i have to go back on thursday. wow sorry ive written alot, thanks for listining :)
Re:who has ROP?Posted by Thrill Seeker on 12/4/2009 at 9:41 AM
I have ROP. I've had 3 different surgeries. I can see 20/200 out of one eye and nothing out of the other eye.
Re:who has ROP?Posted by BE1228 on 4/2/2011 at 4:09 PM
Late response, but I just joined this site, so that's my excuse.
I was born 4 months early in 1988, so I'm 22 right now. I had a bunch of problems typical of preemies (weighed one pound, six ounces; had underdevloped lungs). I also had intraventricular hemorrhaging in my brain (grade 3), which I think impacted my ROP, making it grade 3+. I had cryosurgery at 3 months of age. Thankfully, that seems to have saved my vision. I'm legally blind in my left eye with 20/40 in my right. After all the stuff I've been reading from other people, I am really grateful that I got off so light.
I haven't had any surgeries since. However, I was diagnozed with a cataract in October of 2009. I've been doing some research, and apparently ROP can cause cataracts and glaucoma. Has anyone had any problems with this? I don't have glaucoma, and I hope I won't. I think having a cataract in my good eye is bad enough. At least it's still small and not affecting my acuity as of yet. : )
I also learned that my lack of peripheral vsion is probably the reason why my night vision sucks. Anyone else?
I think I might post my own topic concerning ROP and cataracts. I'm curious if anyone else has had this happen.
Re:who has ROP?Posted by Joe S on 4/3/2011 at 11:41 AM
Your peripheral vision is from your rod cells (also where most of your night vision comes from) and they are at the highest concentration towards the outer part of your retina. Your macula is the center area which is the highest concentration of cone cells. As you move from the center or macula out, you start get less cone cells and more rod cells (kind of a mix until a certain point). So, you are right on about that.
I have a different condition called RP or Retinitis pigmentosa. My retina basically deteriated from the outside to the inside. I got to see that change over time. I have very little vision now, a couple of degrees or less than one percent.
Welcome to TeenConnect!
Re: who has ROP?Posted by Thrill Monster on 11/29/2012 at 4:34 PM
I was one pound, 3 ounces.
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