Blind and Visually Impaired Community
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RP diagnosis (self.Blind)
submitted by GraveDangerr
Hi.
So. I am a 26 years old woman and.... I just got diagnosed. I am still... honestly I don’t know how I am feeling. I never would have known if it hadn’t been for the optometrist office I used to work at where I did testing for visual fields and they noticed a decline in my peripheral.
What was interesting is I did not notice ANYTHING. I have worn glasses since I was 15. I have had some difficulty (very little, but there) with driving at night but I always pegged that to do with astigmatism and glarey issues. But I literally noticed nothing else. According to my opto, my retinas are healthy and I didn’t have the usual symptoms so they very confused and it took 2 specialists to give me the diagnosis. Today.
I was told I have a mild form of it, and the gene is RHO. But... I know it is still degenerative no matter what. I was told it is not dominant and that I have a 50 percent chance of passing it down. Tracing it to my family is hard because no one, as far as my parents can remember, had any eye disease. The specialist said it was a good sign that I have not noticed anything and that every case is so different and individualistic and that I might not even notice anything for years, but... years could be five years from now, right?
I don’t know... how to take this. I feel shattered. I just became a teacher and I don’t know what this means for my future.
I also love reading and writing avidly, and am a serious t.v show/movie buff. I just... yeah.
So. I am a 26 years old woman and.... I just got diagnosed. I am still... honestly I don’t know how I am feeling. I never would have known if it hadn’t been for the optometrist office I used to work at where I did testing for visual fields and they noticed a decline in my peripheral.
What was interesting is I did not notice ANYTHING. I have worn glasses since I was 15. I have had some difficulty (very little, but there) with driving at night but I always pegged that to do with astigmatism and glarey issues. But I literally noticed nothing else. According to my opto, my retinas are healthy and I didn’t have the usual symptoms so they very confused and it took 2 specialists to give me the diagnosis. Today.
I was told I have a mild form of it, and the gene is RHO. But... I know it is still degenerative no matter what. I was told it is not dominant and that I have a 50 percent chance of passing it down. Tracing it to my family is hard because no one, as far as my parents can remember, had any eye disease. The specialist said it was a good sign that I have not noticed anything and that every case is so different and individualistic and that I might not even notice anything for years, but... years could be five years from now, right?
I don’t know... how to take this. I feel shattered. I just became a teacher and I don’t know what this means for my future.
I also love reading and writing avidly, and am a serious t.v show/movie buff. I just... yeah.
gracers94 7 points 3y ago
I’m a 24 year old female who was diagnosed at 2 and I’m also a teacher, PM me if you want! Also, I think it’s only 50% if it is dominant. If you’re not dominant your parter would also have to carry it in order to pass it down
mammaube 5 points 3y ago
Hey I'm a 23 yr old female with RP. If u wanna talk let me know. I've had it since I was 5.
lurking_in_the_bg 3 points 3y ago
>I was told it is not dominant and that I have a 50 percent chance of passing it down. Tracing it to my family is hard because no one, as far as my parents can remember, had any eye disease.
I'm the only one as far as I know who has RP in my family going back 3 generations. My siblings all wear glasses but have no symptoms of any eye disease, I guess that's just how the dice rolls sometimes in genetics.
As far as your future and your profession is concerned, once you've had time to cope and process this I think you'll be ok. I've had RP since birth and although it has gotten pretty bad it was such a slow degradation over time that you really don't notice it. I'm no doctor but if it's a slow burn and you're barely noticing any symptoms now I think you'll be fine and have a wonderful career in teaching well before you have to give it up. Just take all the time you need and know that your life isn't over, this is just a minor setback.
I'm the only one as far as I know who has RP in my family going back 3 generations. My siblings all wear glasses but have no symptoms of any eye disease, I guess that's just how the dice rolls sometimes in genetics.
As far as your future and your profession is concerned, once you've had time to cope and process this I think you'll be ok. I've had RP since birth and although it has gotten pretty bad it was such a slow degradation over time that you really don't notice it. I'm no doctor but if it's a slow burn and you're barely noticing any symptoms now I think you'll be fine and have a wonderful career in teaching well before you have to give it up. Just take all the time you need and know that your life isn't over, this is just a minor setback.
[deleted] 1 points 3y ago
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obex_1_kenobex 2 points 3y ago
I'm a retinal surgeon and have many patients with RP. People with RP tend to do very well because it progresses slowly and gives you time to adapt. Most of my patients have careers (teachers, scientists, lab techs, vet techs, and clerks to name a few off the top of my head) and continue to do the things they like and need to do (including reading and writing). I hope hearing that helps you. Also theres a great deal of gene therapy research going on for RP which may bring tangible benefits for you in the future.
The diagnosis of a progressive retinal disease is understandably difficult, I wish you peace as you process the diagnosis.
The diagnosis of a progressive retinal disease is understandably difficult, I wish you peace as you process the diagnosis.
[deleted] 1 points 3y ago
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