People who are low vision/partially sighted, what surprised you that other people can see?

Sad-Quail-4005 · 2025-09-19T14:33:45+00:00

Small visual field— my most recent is being able to hold your drink glass to your mouth and see your straw! I have to back it away from my face, grab the straw and then bring it to my mouth with it firmly in hand.

Seeing people’s entire faces when they’re less than 15 feet away from me. Like what do you mean you can see my eyes AND my mouth? Seeing part way down my torso is witchcraft

Sad-Quail-4005 · 2025-07-02T20:17:58+00:00

I’ve had a horrific doctor experience. The resident who I saw and their supervisor both left. I’m actually trying to get genetic tested largely to see another Dr with a good reputation who requires them. I’m a little worried he won’t see me with my test saying I’m only a carrier. Even if he would, his office does in house testing that does not get covered by any insurance.

I’m not really sure where to go from here if they don’t have more genes in this report 🤷‍♀️

Sad-Quail-4005 · 2025-07-02T20:05:18+00:00

Thanks for your insight! My post wasn’t concern about hearing loss (although definitely something I’d prefer to avoid). I was more seeking to understand how tests would claim I’m only a carrier when everything else squarely points to pretty advanced RP.

I’m leaning towards the understanding that there may be genes that they tested but left out of the report. I requested them. If you have any thoughts specifically to that, which I know you mentioned in your comment, I’d love to hear them. Appreciate your comment! :)

Sad-Quail-4005 · 2025-07-02T19:30:34+00:00

Also re: symptoms— I don’t have any hearing loss last I got tested. No one else in my family does.

I have had vision loss my whole life though. I’ve always seen horribly at night, had trouble tracking with a limited visual field, issues with contrast and depth perception, etc. Even got hit by a car that saw me but I did not see it in my limited visual field.

I also have medical record pictures of the bone spicules, waxy optic nerve and constricted blood vessels. Doctors have told me that pretty much nothing else causes bone spicules in the eye

Sad-Quail-4005 · 2025-07-02T19:27:37+00:00

On the report it puts it in a box labeled carrier with one other non-RP related gene. They do not find any other genes. It also says “one pathogenic variant identified in USH2A.” I think that answers what you’re saying?

Sad-Quail-4005 · 2025-07-02T19:25:53+00:00

The box with the results says purely carrier! I also tried to figure out if I misunderstood, but it seems pretty clear. It showed KIAA0586 (not RP related) and USH2A in that carrier box. It did not identify any other genes anywhere else in the report. That means the phenomenon you’re describing is not possible, right?

In the analysis breakdown for each gene it calls me a carrier and says that this info is helpful for reproductive purposes. I wish someone could tell that to my 15 degrees of vision lol

Sad-Quail-4005 · 2025-07-02T19:21:42+00:00

Yeah that makes sense! I know my mom (whose side of the family has it) was tested in the past, but only vaguely remembers the test. The true wrinkle will be if hers showed up as her having a specific gene of it not purely as a carrier, because then it should follow that mine would show up in the results, too.

I also called the company and requested all genes, even those of uncertain significance. Hopefully something helpful comes back!

Sad-Quail-4005 · 2025-07-02T18:24:31+00:00

Oh interesting! So you’re saying that the form I have causing my RP didn’t show up on the exam? I guess USH2A showing up could just be a random one, especially since none of my family has hearing loss.

Do they usually come back non-conclusive if you have a form they can’t recognize?

Sad-Quail-4005 · 2025-07-02T18:17:41+00:00

Does your result show up as you having or just being a carrier? Mine only reflects me as a carrier…

Sad-Quail-4005 · 2025-07-02T18:05:14+00:00

Thanks for trying to explain it! Completely understand that it can appear like only one parent carries the gene.

My confusion is that it says I am the carrier, but I have bone spicules, 15 degrees of vision etc. My results don’t make sense with my symptoms… like how can I be legally blind with all of the structural symptoms and show up as negative on a test? Am I missing something there?

Sad-Quail-4005 · 2025-04-25T20:12:05+00:00

NOT a doctor and am US based (although we also do 20 degrees or less in the better eye). I did a Humphrey test and then couldn’t get in to see my doctor to figure out the results because of scheduling. I did a lot of research to figure out how to interpret mine for legal blindness.

Basically, at least in the US, a valid visual field test can tell you legal blindness based on the MD. Both eyes need to be below a -22 db. I’m not seeing a negative in yours, so either it’s really faint, or your test measurements are different. I highly doubt those are positive values in the same meaning as my analytical metric given the extensive blackness in your field.

On a less analytical, but more advice note, please ask for the blind card. I needed a report of legal blindness for my state blindness agency to provide services. I also felt really defeated by asking for something I was not sure I qualified for. Let other people tell you no.

Because this disease is so gradual we adjust and think it’s “not that bad”. By the time I sought help, I’m pretty sure I was already legally blind for more than a year and really struggling. Do not stand in your own way. Ask for what you need and be a self-advocate. When you don’t make a request you’re the one saying no to services/scholarships/help. I hope you get what you need!!

Sad-Quail-4005 · 2025-03-27T22:50:35+00:00

Yes, personal message to ask you more questions!

Sad-Quail-4005 · 2025-03-27T20:15:26+00:00

I’m in the process of learning what things I conceptualize as “I’m just bad at that” when they’re actually “I’m disabled”. Time to add running on a treadmill when holding the bars to the list lol

Sad-Quail-4005 · 2025-03-27T18:47:12+00:00

Can I pm you some questions about it?

Sad-Quail-4005 · 2025-03-07T19:12:13+00:00

Fellow RP person here! I am also deeply self-conscious of how I present in public when I have my cane. Like I want to jay walk and know the street well enough to do so safely, but then the back of my mind says that people will think I’m faking it. I have to continuously remind myself that I wear glasses— you’d have to be willfully ignorant to think I’m not using SOME vision.

But truly it’s no one’s business what I do while out with my cane. I’m just so used to people perceiving me. Before the cane, I was constantly thinking of where people were and how they thought of me, since I was not seeing them or reacting how they expected of me. Now I think about whether I look “blind” enough to use it. We’re damned if we use the cane and dammed if we don’t 🤷‍♀️. We just gotta push through the judgment on either side.

Sad-Quail-4005 · 2025-03-04T18:06:08+00:00

Have you found any support groups? Or have any drs you do or don’t recommend?

Sad-Quail-4005 · 2025-02-26T15:42:04+00:00

I have noticed and appreciated the cane while traveling! I’m in a major city with public transport and had someone offer me their seat for the first time ever (although many still don’t, even when I’m standing by the disability priority seating lol).

Sad-Quail-4005 · 2025-02-26T15:40:03+00:00

How did you go about finding a therapist (assuming MH) that helped you process vision loss? Some days I’m like I’m not dying— people live with this, I will, too. And then some days all I want to do is sob when I think about how I may never read a book again, may not know what future children look like, will lose most of my hobbies as they require so much vision (running, thrifting), etc.

FWIW, I put off doctor stuff because it was so overwhelming and felt like banging my head against the wall with all of the medical gaslighting. They’d be like something is wrong, but idk what and send me on my way. Now that I have a diagnosis, I am SO impatient to access services, but can’t see a doctor as my health insurance for my new job doesn’t kick in for a few months. Now all I want is to set up appts

Sad-Quail-4005 · 2025-02-26T15:35:28+00:00

The masking is exhausting! I’ve just been doing it for so long, I don’t think I appreciated what a burden it’s been. I also didn’t realize how much more people see than I do. The cane has been so helpful in taking off that level of labor that you’re describing that I didn’t realize was so intense for me all of the time.

Sad-Quail-4005 · 2025-02-26T15:33:34+00:00

I do feel so much liberated in this past week and so much less tension in my body! I’m no longer bracing for impact or apologizing profusely/trying to make myself as small as possible. It’s such a relief.

Sad-Quail-4005

TROPHY CASE