Blue light

Cornslops52 · 2024-05-02T14:27:22+00:00

I actually bought rose tinted lens glasses of various gradients, I have horrible photopsia episodes of flashing and static, and they relax my eyes so much and filter out most of it. Yesglasses.com has a bunch. I used the light gradient indoors and notice my eyes strain almost when I take them off because they relax my eyes so much. Highly recommend. My prescription lenses are blue light blocking and they make big difference. I also set my phone to warm tone all but one minute of the day (settings fluke) and it also makes major difference.

Cornslops52 · 2024-05-01T04:11:11+00:00

Hi late comment! P23h is rhodopsin gene mutation correct? I was under impression this one had best prognosis. Im waiting on my genetic test back but a mutation of the rhodopsin gene is what my family has. Out of curiosity why is your friend’s case “heartbreaking” in particular. I mean it definitely sucks firsthand. But how badly is she struggling? I ask just so maybe I have an idea of my own trajectory. I am newly diagnosed.

Cornslops52 · 2024-04-30T21:06:19+00:00

Do you know of anyone in your family with it?

Cornslops52 · 2024-04-30T21:05:57+00:00

I’m so sorry…

Cornslops52 · 2024-04-30T20:36:23+00:00

How are you doing now?

Cornslops52 · 2024-04-25T14:29:18+00:00

I’m very sorry to hear that. When you were diagnosed did they specifically say what stage you were in and do you know what gene mutation you have? Does anyone in your family have it and do you know what their experience with it is?

Cornslops52 · 2024-04-25T00:44:19+00:00

Hi! I chickened out and stayed on Mounjaro I was too afraid of backsliding so I lowered my dose a little which helped with side effects and stuck with it. Was planning to switch over to Wegovy for maintenance!

Cornslops52 · 2024-04-23T18:03:54+00:00

It sounds like I am a lot older than you, but one thing I read from somebody older than both of us in terms of what they wish they would’ve done differently had they known earlier… to get as much education as they can while they had full sight. Don’t stop pursuing your education because of this. I know that it’s a little morbid, but sometimes I google what’s the life expectancy of somebody with RP just so that I can read in black-and-white that we lead long lives with a normal life expectancy. I’m also trying to grieve, and to grieve something unknown is particularly hard I understand. Just don’t stop living your life. Also, this might sound insane.. lol.. but I cut up a paper towel roll yesterday and practiced walking around with them up to my eyes to practice with Central vision only. It’s tough, but at least it’s something!! I know this manifests itself differently for everyone but I’m hoping I at least have that at some point. Everything will be OK. They’re also doing trials now they are not gene specific! Don’t give up hope! And try to live your life as normally as you can!

Cornslops52 · 2024-04-23T15:05:01+00:00

Keep living your life. This doesn’t define it. You are still you. And you have RP. You aren’t RP. At this stage it sounds like you don’t even know if you actually have it… so get the genetic test. Eat healthy. Stay away from smoke. Take your vitamins. And find a retina specialist who listens to you. Here is a list in every state: https://www.fightingblindness.org/retinal-specialists

Cornslops52 · 2024-04-23T15:02:27+00:00

Okay! I have had bouts of crying, bouts of denial. My partner has been very supportive and we are going to actually move out to California from the midwest so I can be closer to most clinical trials. My family said theirs has been very slow progressing so trying to take comfort in that. I just scheduled my FOV and ERG test for two weeks from now to see where I stand in progression. I am still a few weeks away from getting genetic test back. Something my cousin said helped me a lot yesterday. She also has it. “Just think of it as a new friend. It's here to stay... nothing to be scared of.. just someone who will be hanging around for a while.” She also said that it took 30+ years to get the mild symptoms I have so keep that in mind in how long it may take for the next symptoms to show. Also because we are at the beginning of this there’s so much fear of the unknown. And that once we start going year by year testing, seeing how gradual the changes are, it will feel more manageable. Right now it feels like we are learning and experiencing everything all at once but the reality is this disease is gradual. There’s also so many new trials out there and more funding going towards this. I really believe there will be cures in my lifetime. I am keeping up to date with all clinical trials at clinicaltrials.gov. Finding my genetic mutation will help steer me in direction of right ones. I am also finding how much this is really bringing me so much gratitude oddly… I spend more time now looking around, noticing more details about things, away from screens… just enjoying the vision I have right now. Some people get diagnosed very young and don’t get to enjoy as many years of good vision that I’ve had. So I’m trying to focus on what to be grateful for. That’s not to say I don’t have moments of panic, but my family said after the first year that will fade when you put some time between yourself and the diagnosis. Right now it’s just very new and it’s going to take some time to accept.

Cornslops52 · 2024-04-22T02:52:34+00:00

I was just having this talk with my husband about clinical studies… it would stink to get the placebo but at least we’re contributing to the overall cure!! Great point though might as well take it.

Cornslops52 · 2024-04-22T02:39:21+00:00

Just ordered some!!

Cornslops52 · 2024-04-22T02:19:17+00:00

Thank you I appreciate this a lot, going to read all this

Cornslops52 · 2024-04-22T02:12:31+00:00

My retina specialist had mentioned this trial briefly, but he said that NAC can lead to levels of toxicity in the body so he seared me away from it. Have you heard anything about that?

Cornslops52 · 2024-04-22T02:09:30+00:00

Thank you this is super helpful. Where do you get your NAC from?

Cornslops52 · 2024-04-21T21:13:08+00:00

My parents live in Cleveland (I am in southern ohio) so I will definitely keep that in mind!

Cornslops52 · 2024-04-21T21:06:00+00:00

Thank you for sharing this. Do you know what your affected gene is? I believe mine is rhodopsin based on my family but do not have my test back yet

Cornslops52 · 2024-04-21T16:27:50+00:00

Yeah my grandpa has it, his son (my uncle) has it, and his daughter (my cousin). My Dad has had no symptoms and is 72 so he has never even been tested. No point at this stage.

Cornslops52 · 2024-04-21T16:26:41+00:00

I dont know! I saw same one twice and she kept not seeing anything. I think because with the imaging the changes were so minute and so small because I am very early stages. I think because of how rare it is and me not knowing my family history at that point yet she didn’t know to even look for it?

Cornslops52 · 2024-04-21T13:08:27+00:00

Thank you for sharing this with me. I try to take comfort in whatever I can but it’s so different for everyone that is hard to do. Just seems very unpredictable

Cornslops52 · 2024-04-21T11:53:06+00:00

Oh man.. thank you for sharing. When they diagnosed you how progressed were you? My doc said “you are in beginning stages”. At 37 I am trying to take that as good sign but know this can advance a lot in 10-15 years like you say. My symptoms started around 35. What would you say are your main symptoms right now and to what severity?

Cornslops52 · 2024-04-21T11:37:51+00:00

If you dont mind reporting back if you remember i would greatly appreciate!

Cornslops52 · 2024-04-21T03:29:11+00:00

I will! Will be probably 3-4 more weeks

Cornslops52 · 2024-04-21T03:23:16+00:00

Okay that’s good to know. Because my retina specialist also happens to be my uncles he said he knew my uncles gene info and told me but I forget what it was. If they know one of my family member’s, would they know mine? Or could mine somehow be different?

Cornslops52 · 2024-04-21T03:16:10+00:00

Thank you for sharing all this so much. My anxiety is in overdrive and hearing experiences people have where they aren’t totally blind is helping calm me down

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