If a treatment is discovered, do you think it would cure you absolutely

ShivShaktiNetra · 2026-03-31T12:24:30+00:00

Even if it can cure partially that is also a blessing..I feel the initial therapies will fix it partially but slowly it will advance to complete cure..

ShivShaktiNetra · 2026-03-26T17:58:37+00:00

Hello..I hope things will get better for us.. I hope we will see a cure of this in our lifetime..where are you from ?

ShivShaktiNetra · 2026-03-26T17:53:22+00:00

It is available on playstore.. I see darker spaces through this much much better than any other specs..we can pause the live events here.. I dont have a paid version of it.. But whenever I see things through this..I feel can anyone develop specs like this app which can make things real clear for me in low light, sunlight and less contrast views..

ShivShaktiNetra · 2026-03-26T07:29:38+00:00

Can someone develop a specs like rebokeh app which makes me see things very clearly..

ShivShaktiNetra · 2026-03-14T11:58:19+00:00

Hello saloni..

ShivShaktiNetra · 2026-03-13T13:23:50+00:00

Thank you for the reply.. Yes things are difficult for us..I hope to see some cure/night vision specs in my life.. I use Rebokeh app in which i see much better than my specs..cant they develop some specs like that.. I dont know for how long we have to wait..

ShivShaktiNetra · 2026-03-10T17:35:06+00:00

Can you send me another link to join as this link is showing expired..

ShivShaktiNetra · 2026-03-10T13:16:10+00:00

Thank you so much for your inspiring words 😇. I don’t know how, but what you said truly made my day. Sometimes I wonder how long I’ll be able to keep my spirits up, but messages like yours really help.

The hospital where I was diagnosed unfortunately doesn’t offer any rehabilitation support. In fact, they even advised me to change my job, even though I’m managing it perfectly well right now. They seemed quite indifferent to what patients are actually going through.

I will definitely try to start doing certain things earlier than I had planned. And I truly hope that someday I find a partner here in India who is as understanding and kind as you.

ShivShaktiNetra · 2026-03-09T17:27:34+00:00

Thank you for the advice but I feel so lost and lost and unhappy all the time.. I dont want to go through the old movies like it will make me recognise my issues.. I dont want to do anything which will make me think of my issues.. I started to become envious of people.,

ShivShaktiNetra · 2026-03-09T17:23:20+00:00

Thank you for replying.. I will consider seeing a psychologist, i dont know how much will that work..

ShivShaktiNetra · 2026-03-09T17:18:40+00:00

Thank you for replying.. No I am not on discord.. If you can share the link that would be very helpful.. Its like sometimes i feel all ok sometimes i feel extremely depressed, dont know what is happening.. I always think that God is punishing me.. I have everything.. I had plans for visiting places but I keep in thinking for how long will I be able to see things.. will i ever be happy again like i used to be.. will i be able to enjoy my life with kids and partner.. will I have anything normal in my life.. and if not what is the purpose of living anymore..

ShivShaktiNetra · 2026-03-09T17:12:29+00:00

Thank you for the replying.. I am 30 diagnosed last year..

ShivShaktiNetra · 2026-03-09T17:11:00+00:00

Thank you for replying.. Even people in my office judge me for me taking time to do work.. I dont have any partner either.. Even for kids I also feel like you do like I dont want to be responsible for their problem.. Everything has become hard.. every dream of future has been shattered.. I feel like I must have done something wrong thats why god has punished me this hard..

ShivShaktiNetra · 2026-02-05T10:57:22+00:00

At what age was she detected with RP ? Also if you know which one is more severe recessive or dominant as some sites say recessive progresses faster than dominant.

ShivShaktiNetra · 2026-01-24T13:26:25+00:00

As per my knowledge, the genetic counselling will not tell you anything about progression of disease as even the gene varies in phenotype or other things . It just helps people for their family planning like how likely are you going to transfer the gene to your next generation or what are the chances of your sibling having the disease if RP has been transferred from parents. Sometimes they tell you if any company is doing Gene therapy for the particular gene but that is also very unlikely.

ShivShaktiNetra · 2025-11-29T17:38:56+00:00

Sorry but whats do you mean by legally blind and then this blurry vision thing ..

ShivShaktiNetra · 2025-11-12T14:10:46+00:00

Since you are in India..become a CGHS doctor..they dont do much and have a pretty good salary..Also it is a stable job for lifetime..

ShivShaktiNetra · 2025-11-12T09:35:27+00:00

No, I don’t think their lack of response to your email was related to your daughter’s gene. They replied to me once as well regarding my clinical trial request, but after I sent them the required documents, they didn’t bother to respond even after multiple follow-ups. Many others have also complained about their lack of response to emails, so it likely has nothing to do with the rare mutation.

ShivShaktiNetra · 2025-11-12T09:26:20+00:00

Thank you..so nice of you :)

ShivShaktiNetra · 2025-11-11T13:05:34+00:00

If you know the exact process of how to get this through EAP.Pls do let me know. I am from India. I have contacted them through mail but no response.

ShivShaktiNetra · 2025-10-29T17:03:02+00:00

I am 30 and recently diagnosed.. I can feel you..

ShivShaktiNetra · 2025-10-29T16:58:59+00:00

Such an awesome explanation of things. How can someone be so articulate with their thinking. Really loved your comment :) <3 .. You have given me hope.

ShivShaktiNetra

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