GOOD NEWS! Routine check up (Rod Cone Dystrophy).
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- Опубликовано: 4 фев 2025
- Hello and welcome to my journey! Here, I have vlogged my routine check up experience. This isn't something that I had done before, but I wanted to make it a positive and inspiring day for myself and to those who will be watching this vlog.
For years, I had been scared to go to my appointments- It's not easy going to a check up knowing that you will probably get told that your condition has worsened. So, I created this vlog to help those who are scared try to be more positive about their experience, and I hope I have achieved that!
Thank you,
Naz x
Instagram- @its.havva
Blog- inmyeyesinmyeyes.wordpress.com
Hey I just wanted to drop and say how impressed I am of you. I have Retinitis Pigmentosa w/night blindness, needless to say it is something I do not advertise and at times are very ashamed of. But I wanted to show support and thank you for sharing because it is a lonely road but it is great to see someone try and take control of it and turn the tide.
Nathan Poitter hey!! Thank you for your comment, I really appreciate that :)
I really do go by the statement ‘if you can not control a situation, then find ways to control and manage it’! (Maybe that wasn’t quite the phrase but you know what I mean!)
I’m glad you liked this and have found it positive :) it’s been difficult but I came to a realisation that life is too short- we all go through the different stages of grieving in our own time though. I know the loneliness that you are talking about living with a rare condition. Molly Burke has retinitus pigmentosa (big youtuber), and she helped me a lot in my journey- have you seen her videos? Thank you - and you’re not alone even if it feels likes it. You’ve got this! No need to be ashamed- this is a part of us and makes up a lot of who we are or who we become in our journey :)
Thank you for this. My son was finally “properly” diagnosed with C/R Dystrophy after struggling with low vision for many years. He has undergone ridicule, bullying, insults and the loss of “friends” because people doubt his condition and insist his eyes look normal. WHAT???
I wish the people around him could adjust to his condition as well as he has.
All the best to you, darling. 🥰
Aw noo! I hope great people surround your son, and that things are looking up for him. Cruel and strange people in the world! Tell him this is his super power!! ❤
Congratulations on your good news I also have Rod cone dystrophy and share the same positive attitude as you do although sometimes it is really hard to stay positive through this disease
Hey! It is super difficult I know, But it's possible to change our thinking and re-wire our brains over time and with some practise. This is our reality. Blindness id another way of seeing
It is good to hear that
Bülent Özulus :)
haha my mom does the same thing, not putting the mask over her nose. I always have to call her out. So happy to hear your eyes are stable. I've recently experienced a major drop in vision, and my doctors aren't sure why. Making constant appointments and not getting proper answers has been difficult, but I'm trying to remain positive. You are inspiring me to be more mindful, Thank you. Great Video
Haha! Oh I'm sorry to hear about your drop in your vision. You can get through this. Sometimes, I find that my eyes worsen when I'm going through a lot of stress and difficult times. It will be alright in the end, and if it isn't alright, it isn't in the end. No worries, my pleasure :) good luck in your appointments xx
@@nazanvisions Thank you for your kind words. 💛
I am also impacted by
I am suffering from RCD please let me know if any treatment is available
I’m from Scotland and have same co Siri on, thunk it would be worth getting an appointment at the eye hospital in London. My local hospital doesn’t seem to give me much information etc
Moorfields wye hospitol are great! Very thorough and informative! Good for rare genetic eye conditions also :)
@@nazanvisions that’s great might have to travel down and get checked
I have a question for you. Did your vision ever get worse then go back to normal when this first started happening to you?
No! It’s either gotten worse or stayed stable :) what about you?
You are absolutely brilliant. My daughter has cone rod dystrophy . I’m thinking take her to Delhi India for the stem cell treatment .
Thank you so much :) how old is your daughter? I didn’t know the stem cell treatment was established now? Be careful! I’m scared about doing things like that as there would be risks!
Hi, what the treatment successful?
Hi
my wise is to talk to the person who is having the same problem like me.
Cool thumbnail
Simply Splendid it’s just so simply splendid
@@nazanvisions I see what you did there