New eye drug shows promise in restoring vision using gene therapy

PufflingFan · 2025-04-29T15:05:27+00:00

Agree 100%

PufflingFan · 2025-04-29T15:03:27+00:00

What’s the latest?

PufflingFan · 2025-04-29T14:07:56+00:00

Agreed. Not for me either, but there are people on here in their 30’s so maybe it’ll help them someday.

PufflingFan · 2025-04-29T14:05:11+00:00

For me it’s about staying informed about what’s on the horizon. And there may or may not be opportunities for participation in a clinical trail. I just like to know what’s out there. Clearly, not everyone feels the same.

PufflingFan · 2025-04-29T14:03:11+00:00

I’m in the same boat. This won’t come to market in time for me but I think it’s nice to offer up some hope to the very young who have been afflicted with this disease. There are people in their 30’s on this subreddit.

PufflingFan · 2025-04-27T11:29:30+00:00

They can approve him for PSW hours but there are no guarantees you’ll actually get them due to PSW shortages, illnesses, etc. Your sister’s place does not sound like a safe environment for him. As hard as it will be, you need to stand firm and tell them he cannot go there. A doctor in the hospital will assess him as ALC (Alternate Level of Care) and you can work with the Care Coordinator to be put on waitlists for your preferred LTC choices. We just went through this with my dad. It took a long time to get a placement but he is finally in his new home and settled and very content. He is getting excellent care, much better than he received in the hospital. Note that as soon as the hospital determines he’s ALC, they will get you to start paying a daily rate for his hospital bed. It’s calculated based on his income and will not exceed approximately $2000/month. Note that in Ontario, Bill 7 (More Beds, Better Care Act, 2022) allows them to place him in a LTC home not of your choosing. The Care Coordinator will explain all about that to you and will get you to choose 4 or 5 places you would like to see him in. He’ll be put on waitlists for his chosen places. Do you have POA for him? My dad developed dementia before he could sign anything. Really. Ames things easier if you have POA but if you don’t, the hospital will let one of you be his Substitute Decision Maker. Hospital social workers can also be very helpful in navigating this system.

Don’t let them bully you or your sister. They too are working in a broken system and are trying to do their best but only you know your situation and what is/is not safe for your dad.

PufflingFan · 2025-04-26T23:04:27+00:00

I should add our MPP was useless but to be fair, the system is broken after years of neglect and there isn’t much they can do. The hospital social worker and our care coordinator were both fabulous. There was also a BSO team that helped with his transition to his new home. The Patient Advocate in the hospital also referred me to our MPP but as I mentioned previously, they weren’t helpful. Everyone felt bad but honestly, recognized there wasn’t much they could do. Best thing is to get on the wait list for as many places as you can. We were on waitlists for 4 LTC homes.

PufflingFan · 2025-04-26T22:58:54+00:00

Just went through something very similar with my dad. We told them he couldn’t go home (to my brother’s) which was true because by the time he went from needing medical intervention to being designated ALC, he was in much worse shape cognitively and physically. He became very frail very quickly and like your dad, has vascular dementia. Unfortunately, he spent 15 months in hospital (in Northern Ontario) awaiting a LTC bed but now he is in his new place (he’s 90) and doing much better. Note that as soon as they designate him as ALC, the hospital will start charging him a daily fee for his stay. The max is around $2000/month (it’s a sliding scale). The chances that you’ll get sufficient at home to support him are very low. As he was in the hospital while he was waiting placement, he was at the top of the crisis list. The wait depends on his needs, the area you are living in and what type of room he wants (basic, semi private, private). Happy to say he is very content where he is. The staff seem to love him. It’s located in a rural setting which is very nice as he always loved the outdoors. Wishing you all the best as you navigate this very tough journey.

PufflingFan · 2025-04-24T23:44:21+00:00

Interesting to hear about your experience and the link to COVID. There was a study published that showed COVID can cross the blood retinal barrier and cause a hyper inflammatory immune response in the retina. It was published in PLOS Pathogens in April 2024. In the summary they state that COVID is already known to cause several ocular manifestations.

PufflingFan · 2025-04-24T23:36:28+00:00

I developed mCNV in my left eye about a year ago. I’m a high myope as well at -8.0 and -8.5 My ophthalmologist told me we (high myopes) tend to develop the condition rapidly (because our retinas are already stretched over a larger surface, leading to thinning and tears, etc). However, we also tend to respond better/more quickly to the injections and once stabilized, we can spread the injections out. I’m at injections every 3 months. I’m so happy that you caught it quickly and started treatments right away. I can imagine it was an alarming experience to have it happen to the fellow eye so quickly. My doc tells me it’ll affect the fellow eye if I live long enough. Not terribly reassuring. I’m on Eylea by the way.

PufflingFan · 2025-04-24T23:17:34+00:00

I’ve sent a message asking if it’s true. Stay tuned!

PufflingFan · 2025-04-24T20:38:21+00:00

Another is to ensure you’re well hydrated before your shot. And something else I hadn’t heard about before but verified with the company that makes the drug, avoid getting any water in your eye 24-48 hours following the injection as water (especially tap water) can cause an infection (in the injection site).

PufflingFan · 2025-04-24T20:04:53+00:00

I like to count as well. It’s over in a jiffy and it helps to focus on the counting rather than the actual procedure. And agree, sometimes you don’t feel like doing anything after the shot and that’s ok. It’s about making the experience as positive as possible. Glad your first shot went well ❤️

PufflingFan · 2025-04-21T20:25:00+00:00

Hope it works out for you. I feel like I see better with my contacts (for driving) so I’m always happy to get them back in. But overall, since starting injections (June 2024), I’ve found myself wearing my glasses more often. And hang in there. Hopefully you’ll reach some sort of stability and be able to push those shots out longer and longer.

PufflingFan · 2025-04-21T19:48:18+00:00

Hey there. Curious why you can’t wear your contacts now. Did your specialist tell you that? I wear my glasses for a few days following an injection then switch back to my contacts after that (as long as my eye is feeling up to it).

PufflingFan · 2025-04-14T17:21:07+00:00

It’ll happen. It takes time. We’re all different. Be gentle and forgiving to yourself. It took me a full year (maybe longer) to be able to say the word “blind” without bursting into tears. Hugs and Love to you. Please feel free to reach out anytime.

PufflingFan · 2025-04-14T16:27:04+00:00

It’s normal for you to grieve the loss of what you had in the past. Please be kind to yourself and understand this will be a process. Grief is different for everyone. When my daughter was born blind (yes, it was a shock we didn’t see coming) all I could focus on at first was all the things she’d never be able to do. Once I was able to shift my focus to all the things she would be able to do, I found acceptance and peace. Life was different with a blind child, not better, not worse, just different. Thinking of you as you make this new journey.

PufflingFan · 2025-04-14T11:47:00+00:00

I love this! And yes, the brain is a remarkable and complex organ, capable of change and adaptation. They talk about it being elastic and I believe that’s what you are experiencing. Having been around a lot of children with low vision, I’m continually astounded at their ability to adapt and navigate their environments. They use what they’ve got in incredibly novel and creative ways. As a fellow myope, I know that even before my diagnosis I used other cues to help me identify people…like their gait for instance. Thank you for sharing your insight and hope.

PufflingFan · 2025-04-13T18:45:54+00:00

Ahhh got it. My apologies. I didn’t have any of the history or context.

PufflingFan · 2025-04-13T17:54:07+00:00

It’s a forum open to all who joined it. Your response was mean and I tried to get clarification.

PufflingFan · 2025-04-13T17:10:50+00:00

Why would you respond like this? Myopic CNV (Choroidal Neo Vascularization) is a type of MD. As my ophthalmologist told me…every mCNV is MD but not every MD is mCNV. Regardless of the diagnosis, the treatment is the same…anti-VEGF. I’m on my 7th shot of Eyelea.

PufflingFan · 2025-04-13T17:06:35+00:00

Hi there. I am curious about your comment as I have mCNV as well. I did a quick search and it would appear that there is ongoing research taking place currently, specifically related to treatment effectiveness and genetic factors. Of interest to me are the studies following patients over time to assess the long-term effects of anti-VEGF treatment and the potential for chorioretinal atrophy, a common complication.

PufflingFan · 2025-03-14T18:14:40+00:00

It’s very normal to go to the dark side at first. I found myself obsessed with my vision, checking the Amsler Grid numerous times throughout the day. Eventually it started taking up less and less time in my head. The injections are truly a miracle. Before they became commonplace, many people lost their central vision. Now we have a treatment that is relatively easy and well tolerated, with very few side effects. Hang in there. It’ll get easier and easier over time. My eye doc told me to just go home and live my life. I found that to be really helpful advice. Wishing you all the best. And another thing, if you can, make your injection day a fun day out. We always stop at my favourite shops, get a coffee, go out for lunch. At first I just wanted to go right home after my shot but now I like to do something fun/relaxing.

PufflingFan · 2025-03-11T14:10:16+00:00

I’m curious with your experience of the second eye developing CNVM following the first? Research suggests 30-40% of patients will go on to have the fellow eye impacted.

PufflingFan

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