So basically my dad who’s 50 years old has had rp for as long as I can remember, he’s not fully blind, but he uses a magnifying glass and always wears sunglasses a lot, he had another test the other day and they said he lost an extra 3% this was his first test in 7 years. He and my mum had 7 kids, 2, of them were from 2 different partners my mum had, but my question is I (22) have an eye test at spec savers Australia, in a few days, is there anything I should be worried about? Can they check for rp if I let them know my farther has it ? He’s the only one on both sides of the family that has it as far as he knows. Kind of freaking out
Angels_Bazooka7 points3y ago
Go to an ophthalmologist and they should be able to give you information on it. If you want to know if you if you carry the gene for it, you can get your DNA sequenced. All of this can be really stressful, but having answers is better than dealing with uncertainty.
Dunnowhat111 [OP]3 points3y ago
Up until my google searching which I shouldn’t have done cause it makes it worse (whoops) I didn’t even know what an ophthalmologist was :/, not sure if you’re from Australia but I have an appointment at an optometrist, will they be able to tell me aswel ? Thanks for the reply,
Angels_Bazooka4 points3y ago
Not sure if they can give you full details, they will probably refer you to an ophthalmologist. I'm in the USA. I've been dealing with RP for my whole life, so I can empathize on how debilitating it is in all areas of life.
YourLocalMosquito3 points3y ago
I’m in NZ, so assuming our systems might be similar. Definitely mention it to the optometrist - they can do visual field tests and might want to dilate your pupils (but that means you can’t drive for the rest of the day) if they’ve got any concerns they will refer you to the hospital - that’s how it worked for me.
CloudyBeep1 points3y ago
No, an ophthalmologist is an actual eye doctor. Specsavers probably won't be very helpful, but it might be a good place to start.
Dunnowhat111 [OP]2 points3y ago
Okay thanks for tips guys, I’ve got to go to spec savers anyway so I’ll just tell them and go from there
Dunnowhat111 [OP]5 points3y ago
In Australia he is also classed as legally blind, doesn’t drive and hasn’t worked for over 15 years
meeowth2 points3y ago
The optometrist might give a visual field test if they think you might have it. I had no idea I had or could have anything. I was at OPSM, I was 21, and the optometrist suddenly had me use the unfamiliar visual field test machine. I was referred to an ophthalmologist afterword, but RP is one of those things that optometrists are good at identifying if it's affecting your vision. As far as I knew I couldn't see in the dark, but it was worse than that.
Dunnowhat111 [OP]1 points3y ago
Thanks for that, yeah I was going there anyway for my glasses but I thought I’d mention it to them and just go from there
homerq1 points3y ago
If you're 22, you could already kind of know. You would have trouble seeing stars at night, and you would already feel that a certain amount of night blindness has set in.
Dunnowhat111 [OP]1 points3y ago
Can definitely see stars and no night blindness
[deleted]4 points3y ago
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Dunnowhat111 [OP]3 points3y ago
No none of that, just my dad having it has prompted me to get tested too. My eyes lately have been very dry and irritated and my vision does seem to be getting worse at long distances I got prescribed glasses 5 years ago but never wore them. Plus everyone else in my family has also wears glasses, Okay great thanks, yeah I’ll definitely see one!
oncenightvaler2 points3y ago
I have this family of disease I have Lebers Congenital Amerosis.
Real_Space_Captain2 points3y ago
I have RP and my grandmother slowly lost her eyesight when she was in her 20s. We tried to hide this fact the first time I went to get tested because we didn't want them to quickly diagnose me without investigating).
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When we asked the genetic specialist the second time she said it was highly unlikely two people that close together have RP (I kind of forget the reasoning behind this but I believe she said she found it hard to believe that my great grandparents happen to both be carriers and then my mom happened to be a carrier, that's just a lot of "luck" so close together). And she's probably right as my grandmother could of lost her eyesight due to a number of reasons. When I asked about having kids, she told me if I married someone who wasn't a carrier, the chances the kids would get RP would be only slightly higher than chances of two random people being carriers.
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But ask to test peripheral vision and do a color blindness test. I know one of the first signs is also poor night vision (which was my big sign). Ask your dad what the first parts of sight he lost.
Dunnowhat111 [OP]1 points3y ago
Just saw your comment, thanks for the info, I believe it was my mum who thought something was wrong because my dad told her the only way he can concentrate on driving is following the lines, as in maybe a bit of tunnel vision ?
K41M1K4ZE2 points3y ago
Yes, they can let your blood get tested for mutated genes and say exactly what kind of RP you have (if any).
When you're 22 and still can see normal in the dark, you have a good chance of not having it at all.
I have RP and am blind at night since I'm 18 years old. The night blindness mostly starts in the late teenie years and is almost everytime the first symptom.
Dunnowhat111 [OP]2 points3y ago
Okay thanks for the comment, damn I’m sorry to hear, yeah my night vision has always been weirdly really good. Just my dad having rp I thought I should get tested too !
K41M1K4ZE1 points3y ago
Don't worry, if you really have that urge to get tested, go for it. Otherwise when you're not even having symptoms, I see no need for that.
Currently there is just one special kind of rp that can be treated with a gene therapy and this one is ectremely rare. Every other one cannot be stopped or healed atm. There are people who think that you can stop it with vitamins or diet or even heal it with an operation, but thats all bs.
Dunnowhat111 [OP]2 points3y ago
I would like to get tested just cause my dad does have it and it would put my mind at ease I think,
bobbysander2 points3y ago
I believe condition is generally X chromosome linked, with women being "carriers" and men being the ones actually afflicted. So if you are male, you most likely don't have it. If female, you are likely a carrier and will pass it on to your children. I definitely recommend getting the genetic testing done. I grew up thinking I had RP, but after the gene testing we figured out it's CHM, a similar condition.
homerq3 points3y ago
>I believe condition is generally X chromosome linked, with women being "carriers" and men being the ones actually afflicted.
That is partially correct. There are x-linked variations of the genetic condition. However, retinitis pigmentosa itself is not x-linked.
Dunnowhat111 [OP]2 points3y ago
I’m a male yes, but how does that explain my dad having it ? I’m definitely going to do all I can so thank you
CaptnSisko2 points3y ago
It is a recessive trait, so two people who have the gene who have kids and don't know they are carriers of the gene will result in a high likelihood that the children will have RP. Neither of my parents had it but 3 out of 4 of the children ended up with it.
Dunnowhat111 [OP]2 points3y ago
Okay thanks :/ I don’t know much about the disease, although my dads had it for as long as I can remember no one has every spoken about it because we all grew up with him being vision Impaired, his parents didn’t know untill he basically lost his license, when he was in his 30s they came over from Italy and didn’t speak any English and I can guarantee they didn’t get his eyes tested at a young age
bobbysander1 points3y ago
As your Dad has it, your paternal grandmother was most likely a carrier of the disease. No problem!
Dunnowhat111 [OP]2 points3y ago
Oh okay, well my grandmother died in her 60s from cancer, but had no vision problems, so does that mean she just carried it without actually getting the symptoms? Sorry I don’t know much about it
bobbysander3 points3y ago
It's quite likely, yes. Women aren't typically affected by the condition, they just carry the recessive gene. There are exceptions though and I probably have an oversimplified understanding of how it typically works. With my condition (as with RP), as a male I will pass my Y chromosome to any son that I have. This should (in theory) leave them free and clear of the disease. If I have a daughter, I pass my X chromosome with the recessive gene.
JennyThalia1 points3y ago
I’m not sure how it works in Australia, but here in Canada, my sibling got tested for it. Our maternal grandfather and a few of his siblings have RP and so does my aunt. They did an electroretinogram (tiny electrodes were attached to contact lenses) and it measures electrical activity of the photoreceptors. They also did visual field testing, where a dot of light flashes and move around and you press a button every time you see it.
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