MY SIGHT LOSS STORY (Rod Cone Dystrophy)

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Here's my in depth story about my sight deterioration and other illnesses that it lead to including: Borderline Personality Disorder, Anxiety, Depression, and IBS!
EDIT / 2021: I was misdiagnosed with BPD, and no longer have IBS. My anxiety and depression are also a lot more under control. These were all labels that doctors had made me believe they would stay with me for the rest of my life; however, through doing deep inner work, and diving into a healthier lifestyle, I have been able to work through my struggles, and have been free of psychiatric medication for over 2 years now.
I hope this video influences others to speak up to, and I hope it inspires people to take a step forward in accepting their invisible illnesses as a part of who they are!
Thank you for watching!
Don't forget to watch my motivational speech:
• Rod Cone Dystrophy mot...
Social media links:
Invisible illness blog- inmyeyesinmyey...
Instagram- @its.havva

Опубликовано:

3 окт 2024

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Комментарии : 108

@TheTezzie1234 4 года назад

Hey. Just round your video. I have Rod cone dystrophy. I'm 33/ 34 in Jan and still have some central vision. It's lovely to see another person who is positive. I live alone and have a guide dog. I play drums.

@nazanvisions 4 года назад

Hey! I'm glad you came across my channel! Hopefully it will be more useful as i upload more videos! I bet your dog is your bestfriend! They are amazing! I don't have a guide dog, but my dog come to most places with me and is my rock! Is the drums tricky to play with sight loss? And yes to positivity! :D

@cristinalays 6 лет назад

I’ve never met someone who had the same condition as me, and finding you here is beyond amazing, it’s so difficult to feel like I am different, I’m 26 and I’m feeling that my vision is declining and it makes me so sad

@nazanvisions 6 лет назад

I'm so sorry that i havent replied to this comment!! Do you have support around you? I know how hard it is, its truly heart breaking. I'm sorry to hear your vision is declining. How would you describe what you can see now? and what differences have you noticed? Make sure you have support around you. There are several visual impairmet charities who offer councelling and support groups etc. If you're in the UK, there's RNIB, which i think is the main one. I'm glad that you can relate :) always hee to talk if you need to! Would it help if i did more videos like this? What topics would you like to see?

@cristinalays 6 лет назад

Naz I’m from Brazil, I do not know any support groups here, so finding your video was very important. this year I began to notice that I lost a lot of my central vision. What scares me most is not knowing what the future of my eyes will look like, do you feel that way too? I'm finishing college and working with what I love, but I'm afraid. I wonder how you explain to people, do you talk about it on the first date? It’s hard because anyone who looks at us sees a “normal” person, and normally they don’t get how difficult it is for us to do the normal stuff, like stairs and cross the street, I always get eyes on me when I’m at the phone, I got used to, but sometimes it makes me sad.

@nazanvisions 5 лет назад

@@cristinalays Of course it's scary not knowing what will happen next! Loosing your central vision is overwhelming, i know. It's not just 'Loosing your central vision', it's more than that isn't it! It's struggling to communicate, struggling to recognise faces, which then leads to being scared to talk to people, to go outside, to socialise. I understand you completely believe me! I'm sorry to hear there's no support groups, that must be really hard, especially with a rare disease like ours. Do you get your eyes tested every year at an eye hopsitol?-Maybe they could direct you in the right way, is there no helplines at all? any visual impairement charities? If there isn't, feel free to always talk to me any way! I'm glad you are folliwing your dreams. I was to, but it wasn't my sight deteriation that stopped me, it was my mental health. Due to sight loss, i do struggle with seriuos mental health problems, which i can say is a lot harder than dealing with the sight loss! Do you struggle with anxiety or any other illnesses to? I find that my rod cone dystrophy has triggered me to have a few other chronic illnesses to due to the stress and anxiety with dealing with the initial sight loss. Other people will alwas have something to say unfortunetly, don't let them bring you down- think of it this way- it's not their place to judge what you go through, i know it's hard dealling with insensitive comments, but we've got to either educate them or just let them go if they dont want to understand. Don't be sad, you've got this!

@LindaHarrison-f5s 2 месяца назад

Thank you for telling your story.My daughter was diagnosed with stargharts at 8 yrs. She is now 46.She has been told recently it's more like rod and cone.Has the same difficulties doing daily tasks as you. When she left school she got a job through an organisation called work bridge working for a govt. Department,She is still working there now .Many years.In her twenties she flew to London to see a friend then went on a guided tour to Ireland.She has also ,with a companion done the New York marathon. Her sight has deteriated quite a bit since then. She has two children now who were born close together and has coped with the challenges that that brings.She needs more help now for cooking the evening meal, especially meat. She has found it very hard to accept her condition, not being able to drive a car for instance.Her children have adapted to her condition, even as toddlers they would point to something hazardous on the floor etc. They are still young and when walking they will take their Mum's hand to cross the road, to manage steps , they can both read now so can read labels and help their Mum choose their clothes on computer to save trying to navigate going to the shops. It has been great hearing your story l hope you get some encouragement from my daughter's experience. Finding agencies that can help can be very difficult at times , my daughter is only now finding more help by doing a lot of investigating and talking to people. Thank you for telling us your story,all the best.

@ROBERT17321 2 года назад

Thank you so much... I have cones dystrophy and I'm feeling completely alone as not to bother anyone.. you explain this battle perfectly.. stay strong and thank you for this... your words will explain what is going on.. You rock and Thank you for the beautiful hope in this world

@tazeennawaz1437 2 года назад

Same with me

@amccord662 4 года назад

Thanks for sharing your story, I have come dystrophy, and I understand what your going through. It’s scary loosing your vision. Thanks for this video!!

@nazanvisions 4 года назад

Hey! Thanks for watching! It is scary- I uploaded this 2 years ago, and my thoughts about it have changed a lot! If I didn't have rcd, I wouldn't be the person who I am today, and I wouldn't have half the drive/ motivation I do as well! Wishing you the best of luck on your journey! I have more videos on my channel about sight loss/ accepting it etc to if you want to have a look! naz x

@amccord662 4 года назад

itshavva I definitely will, I’m a subscriber now, so I won’t miss a thing. I recently got my diagnosis, and it’s hard adjusting, but my family , friends, and even co workers have been so supportive.

@nazanvisions 4 года назад

MAKEUPJUNKKI thank you! Sounds like you have a supportive group of people around you which is so important!

@canerarslan9754 3 года назад

Hello I have cone dystrophy too and feel similar feelings as yours. My dystrophy is slowly progressive so probably at my 30's to 40's i will seriously lose my vision (I'm at 22 now and diagnosed at 16). I have little or night blindness, suffering from light sensitivy and color blindness. I have special sunglasses which i can't go out without it. Anyway, after seeing your video I am feeling little better and I feel less lonely and depressed. Thanks your video and your positivity. Thanks to youtube I can find people with similar conditions with me.

@nazanvisions 2 года назад

aw amazing!! Thank you so much for sharing - I know how lonely it can get, but you are not alone, and I'm super happy that my video helped you - I have loads more on coping with rod cone dystrophy! Good luck on your journey, best wishes, Naz :)

@canerarslan9754 2 года назад

@@nazanvisions Thanks for your reply, I watched several of your videos after watching this video. Afterthat, I feel less lonely now because i know that there are plenty of people out there which share similar or same condition with me. Thanks for being a voice for invisible illnesses.

@nazanvisions 2 года назад

@@canerarslan9754 That's really made my day, so thank you for sharing :) The internet has its negatives for sure, but I love that searching for people with the same or similar condition is readily at your finger tips ! You are not alone !

@JuanAlcazar 6 лет назад

This was a great and motivational story to hear. I don’t have your condition but I could relate to so much of it. I’m a legally blind filmmaker here on RU-vid. You just got yourself a new subscriber.

@nazanvisions 6 лет назад

Wow a film maker! I will check your channel out right now! I have subscribed back :) I’m glad you could relate and thank you for the nice comments :) what’s your condition?

@JuanAlcazar 6 лет назад

Naz While I don’t have your condition I still can relate quite a lot. I have myopia and astigmatism. I have peripheral vision problems and I’m unable to see well at night or low light. I need to use the magnifier on my phone, tablet and laptop especially when editing video. Also I try to turn on night or dark mode on any site or app that I can. Dark mode along with large font on the Kindle app is a life saver.

@Kilo_one_Alpha 2 года назад

This video really helped calm me down, found out yesterday that my little girl has an early onset Macular Distrophy, we’re not entirely sure what we’re dealing with but naturally you initially think the worst! It’s so much to process and your video really has helped me understand the road ahead, it’s given me hope that we can get through this together and encouraged me to be strong for her. Thank you x

@nazanvisions 2 года назад

Aw thank you so much for sharing that with me! Nothing can get in her way with a supportive parent like you especially! I filmed this video years ago, and it was probably at the hardest time of my life, but the last few years have really opened my eyes (metaphorically), after diving deep into therapy. Blind isn't bad, its society and its misconceptions and constructs that make it awful for sight impaired people! Have you seen my panel video ? It should be the latest video that I've posted, and I would really recommend that you watch - lots of interesting topics on this subject and about parenting a child with a health condition. Try to find visually impaired friends for your daughter so that she doesn't feel alone and someone/ people to share her pain with as she progresses through life, its challenges and all its wonders :) Thank you again, naz :)

@emmah9251 6 лет назад

Thank you for the video. I have cone rod dystrophy too which they have recently told me is just bigger term for eye conditions such as RP. I am so confused I don't know if I have cone-rod dystrophy or RP now. I was registered as legally blind early last year and I also had the same experience you did with the hospital telling me that I would go blind. I freaked out and then the professor said oh no not as in totally blind like seeing nothing. I nearly burst into tears I really didn't realise that my condition was that bad until they told me that. I dread going back each year for them to tell me my eyes have got worse. I started out by using a symbol cane and gradually now have started using a guide cane. I think I'm going to ring to start using a long cane soon as I am really struggling when I am out. Although it is really tough I have learnt that you can't let anything stop you and you should do whatever you want to do. I qualified as a Pilates instructor in 2014. I have continued teaching despite my sight and I believe mysite brings out the best in me with instructions. I Focus more on people's body position and movement rather than being distracted by faces or other things around me. I use lots of imagery so that people really feel instead of being able to see what they're doing. Never let anything stop you, always follow your dreams and goals and as you said, everyone is going through something no one is perfect it's just finding a way two work with it or around it. I'm still scared of what the future holds but I have also learnt that what is the point of worrying about something that may not happen. I may or may not completely lose my sight there may or may not be a cure no one knows and I am tired of getting upset and being worried about the future that I do not know. I don't even know if this made any sense as I'm extremely tired and should probably be going to bed lol. Sorry for the ramble xx

@nazanvisions 6 лет назад

Hello! Thank you for watching this video! We seem to have experienced very similar things! RP is a totally different isn't it!? I thought that it was a totally different condition, although they do share a lot of similiarities... to be honest i don't think doctors know wha tthey are talking about half the time! You are definility on the right track of a positive mindset, that's how i see it to! Don't be sorry for rambling! Well done for becoming a pilates instructer despite the difficulties, that's so cool! I bet you've inspired a lot of people to! Thanks for watching and commenting :) xx

@kamatamjaideep8166 5 лет назад

Hi I am facing the same problem now I am 25 and I was unable to work

@daniehollen4183 2 года назад

Oh my gosh, I have this. I am 75 and it happened 3 years ago. I have every feeling you do. People just dont understand, and why glasses wont fix this. I. Too get anxiety attacks with a lot of people around, and being a passenger in a car. I sorta see things that could be a shadow, but i think it is a car or person. Finally someone has told my story... I have a live in who mainly helps me for driving me to appointments. i cannot cook and do a lousy job of doing dishes. This could be me talking. I had 20/20 vision before this. I have an IPAD Pro 12.9. that makes it easier for me to read certain things with reader view. Maybe now my friends will understand what is going on with me. I hate asking for help too.

@nazanvisions 2 года назад

Hiya! Thank you for commenting and sharing this with me! Sight loss can leave us feeling quite heavy and misunderstood - a lot of grief comes with it too I think! Nice to hearr that you have someone helping you. I posted this video at a time where I was really struggling with panic attacks and at a time I felt quite lost, trying to find my feet/ place on the earth. A handful of years on, I am much more positive and aware of what I can do to use this condition as a gift. I no longe have panic attacks every day and have reached out for much more support. Asking for help has become easier too - I realise that I need to ask in order to thrive, and that asking for support doesn't take away my indepndance, but helps boost it. I hope you find your feet soon too - remember that it takes time.Be curious about the process

@mathewlegrange5880 6 лет назад

You are really beautiful. And you seem like a really lovely person. I have a similar condition to yours - cone rod dystrophy. I have had poor vision my whole life and it has slowly gotten worse over time. I also have trouble recognising faces and coping with glare and bright light. It is really difficult because nobody around me can relate to what I am going through. But I perservere and try to live as happy and independent a life as I can. Stay positive. As I said you are a really beautiful girl and I'm sure that there are many great things in store for you in your life.

@nazanvisions 6 лет назад

Mathew Le Grange aw thank you so much! The best thing you can do is research people who are going through a similar thing, i did that by networking and connecting with people online via Facebook groups and generally just discovering you tubers who share similar conditions. I’m glad you could relate and I’m here if you want to talk about it! The best thing we can do is not let our circumstances limit us from our dreams :) thank you again :)

@briancowan528 Месяц назад

Thanks for doing this. it's important.

@nazanvisions Месяц назад

Thank you for your comment :)

@garybrooks541 4 месяца назад

Heart bleeds for you. I have the same and also Cornea dystrphy. I'va had a Cornea transplant and a lens replacement for that which has helped but as you know atm there's nothing for the retina problem. Going through the same issues, sometimes notice people looking at me in public when I am struggling to read . whenever I do something different in my life the first thing I think is if I will be able to do it.. cope.. people think I'm ignorant when I have walked past someone but it's because I don't see their faces. The things you struggle with I know too well. Most people are sympathetic but there are people that have laughed and find it funny. I just think about where progress is going, stem cell research etc. I think there is still hope for us x

@nazanvisions 4 месяца назад

Hello! This is an old video of mine, I’m much more positive about my condition now and am more able to manage! (If you look at my more recent videos). Don’t let others make you feel disabled. We are more than capable to achieve what we want, live how we please, with the right support and management in place. I don’t see how others view me so I just ignore the outside world - we are trying the best we can and life isn’t exactly easy for us to navigate, especially when we have others creating barriers for us with their ignorance. Teach those who are open to listening and block out those who don’t. Don’t wait for treatment, because it may not happen in our lifetime. Don’t wait for a cure, and start living now ❤️✨ thank you for your comment, I wish you the best in your journey - don’t forget how strong and incredible you are. You’ve got this!

@bcgems6566 2 года назад

Thank you for giving me this insight .As a father of a 33 year old daughter going through this I learned so much here.I ill certainly look forward to seeing more of your videos/blog.All the best to you and yours

@nazanvisions 2 года назад

Aw thank you for your comment! I'd really recommend my disability awareness panel video (my latest). Heaps of useful information, that I'm sure that your daughter will find useful too :) Take care! All the best to you too!

@zainshaikh1344 6 лет назад

Naz that was a very great story. i have the same condition as you but i can see my surroundings but when i focus or directly look at an object,face,words whatever it is i cant see it its basically blind to me. Example: there is a blue piece of paper and there is a word that says hello on it that is a red colour, if i focus or directly look at the red word i can only see the blue piece of paper. Also at night if there is no light then i can only see outlines of objects and people. i passed my cooking course in college and also worked in a restaurant which was awesome. definitely subscribing.

@nazanvisions 6 лет назад

Yes i totally get what you mean as i get that to! Although, i probbaly wouldnt be able to see the red writing at all! Well done for passing your cooking course that's amazing! Thank you for subscribing! :) xx

@nazanvisions 6 лет назад

And i get that with the night thing to! Challenging isnt it!!

@Lara-fv8fg 6 лет назад

This is an amazing video thank you for this ❤️ my father has rod cone dystrophy and I’m getting tested for it soon. I’m really glad you talked about how it has effected your mental health because I feel like it has effected me greatly, as well as my father.

@nazanvisions 5 лет назад

no worries

@Lara-fv8fg 6 лет назад

@nazanvisions 6 лет назад

Hello! Thank you for watching!! I'm glad you found this useful, and sorry to hear it's affected both yours and your father's mental health. Let me know what happens when you get tested to! what do you do to help yourself mental health wise? Although it's a genetic condition, no one in my family has Rod Cone Dystrophy. If you get diagnosed with it to, I hope your dad can help you through his own experience :)

@CaylawithaC 6 лет назад

Hi! I am a visually impaired RU-vidr as well. I have RP, which I think is pretty similar to Rod cone dystrophy. I’m not sure what the difference even is. But anyways, this was a good video and I look forward to seeing more from you

@nazanvisions 6 лет назад

Cayla with a C hey!! They are quite different, but even if you had RCD to, I bet we would experience it completely differently! Ahh that’s great that you’re a RU-vid to! I’ll check out your videos! Thank you so much :)

@CaylawithaC 6 лет назад

Naz oh. I tried googling it and couldn’t really find any information. A while ago my doctors went back and forth between telling me I had rod cone dystrophy or retinitis pigmentosa. Last I heard the doctor said they were pretty much the same thing. Do you know what the difference is?

@nazanvisions 6 лет назад

Cayla with a C really?! I know they are both conditions that are affected by the retina, but I’m pretty sure they are not the same thing! Is retinitis pigmentosa more like tunnel vision? And rod cone dystrophy isn’t quite that I don’t think- the way I was explaining it in my video- what similarities/ differences do you have to me? (I don’t think your doctor knows what they are talking about!)!always go to a specialist if you can! Xx

@nazanvisions 5 лет назад

Thank you to everyone who is stil watching! Don't forget to SUBSCRIBE, and turn your post notifications on please! Follow me on instagram for more inspirational posts, and feel free to comment below with your stories to! Lots of love

@kalpanachettri8483 6 лет назад

I have the same diagnose at age of 21 my doctor rectify that. Your Video is really helpful keep motivating people.

@nazanvisions 6 лет назад

Kalpana Chettri thank you! I’m glad you could relate! always!! Take care! X

@sajalarora9029 5 лет назад

Jesus! That's me... I was diagnosed with Retinitis Pigmentosa in 2011 when I was around 19. In the age of 25 (2019) on a second major check-up, it turned out that I have CRD. It doesn't really matters to me because both has the same endings. But I would say that I had/am facing all of those experiences like you. It's really great that what you are doing on RU-vid.

@nazanvisions 5 лет назад

It's so great that the internet exists! You don't notice that so many people experience the same things as you do right! Glad you could relate and thank you :D

@sajalarora9029 5 лет назад

Hey just wondering... What's the state of your vision right now. As I saw in a couple of videos of yours you were reading from a paper. Plus I have some other questions as well will it be okay if we discuss over here!?

@nazanvisions 5 лет назад

@@sajalarora9029 hello of course ask away! Are you talking about when i did my speech? I had memorised my speech and put about 4 words on each piece of paper that i had with bold marker pen, so they were essentially ques for each section of my speech if i forgot anything. Anything elsse you saw would've been in bold pen again right? i used to be able to read letters, and print, and my own handwriting but now unless its super huge and in bold pen i really struggle to, so i get people to fill out forms for me, or if i get a letter through, i read them through an app as the print is too small, and my eyes either just can't see them or are very strained by trying to work out what each word says. Hope that answered your question! What were the other questions? do you have rcd to? :)

@sajalarora9029 5 лет назад

@@nazanvisions Yeah! Thanks for that. And yes, I do have RCD myself. For a long time until my recent eye check up, I had been a part of various communities of Retinitis Pigmentosa. You are the first person I discovered who has RCD. And when I watched your story, it was me...Everything you said, I had been through 90% of it. Plus you have so many things like me such as I am so much into music, I love travelling and doing adventures and yeah even your name rhymes with my name(Sazz)... The only thing is I am an introvert and you are not :). Talking about the questions, yeah I do have so much to talk to you about but that will turn this into a huge thread...

@nazanvisions 5 лет назад

@@sajalarora9029 hello!! sorry, the comments get lost into each other sometimes so i find it hard to reply to them when there's so many comments!! Haha yes we do have a lot in common! You're doing the right thing by looking on youtube for people who have the same condition though- it's so helpful to know that you're not alone. Yes i am quite extraverted, but can be an introvert to! Being an introvert isn't a bad thing! We are all different and unique :) Music and travelling is so fun isn't it! Check out Molly Burke's youtube if you haven't done already, she's amazing!

@cathyperry7834 2 года назад

Thank you for your courage..I totally relate..but im scared for the future..have a lot to learn..

@nazanvisions 2 года назад

Thank you for your comment, I know.. the unknown can be a scary place - lets not forget that we share that universally with a lot of people! You are not alone

@libertycarpenter6359 6 лет назад

YOU ARE AMAZING XX

@nazanvisions 6 лет назад

You are amazing to liberty 💙💙

@heraclitusmaximus9530 Год назад

Totally can relate to this young lady!

@nazanvisions Год назад

Glad you found something to relate too! :)

@gopishiv4357 2 года назад

I can seriously understand your issue.... If you ask me 3 years before I don't believe this.... But now I can. Reason I am also having this issue. My age is 34. Person who go this tough condition can understand. No one can ... I paay for you.

@mohammaduthman1983 6 лет назад

Hi, I hope all is well with you. Just wanted to say you bought a tear to my eyes when listening to your story. I understand exactly what you were saying. Being in the same category as you, brings back a lot of painful memories. I wish I had a positive mindset to overcome my dystrophy. I wish there was a cure for all who are visually impaired. I wish there is hope out there for us guys. Sorry for the rant lol... just wanted to get a small piece of my brain out there. Thank you, you are amazing! Hope you do well in your studies ♡

@nazanvisions 6 лет назад

Mohammad Uthman hello! I’m so glad that you could relate- changing your mindset is not an easy thing to do, but think this way- your condition makes you who you are and whatever you’re doing in your life is probably shaped around and linked to the difficulties that you’ve had to face with your condition. I’ve found that going through pain makes you a lot wiser than people around you, and how I see it is- life is too short to be sad, and if we dwell on things gat we can’t change, then we will all be sad for the rest of our lives. Time flies by so quickly, and there’s times when I even look back, and say to myself ‘why the hell did I put myself through all that pain‘?!’. Don’t be hard on yourself for being sad, you can’t help it! Everything that happens, truly happens for a reason- I’d advise researching people who have similar conditions- miles Hilton or molly Burke- they really helped me accept my condition as a part of me, and I’m sure they will help you to :) good luck with everything and take care

@mohammaduthman1983 6 лет назад

Naz thank you for the tips.... what you said makes a lot of sense. I think over the years, over thinking things in general is having a negative effect on me. I used to think intensely about myself and how my life is turning out because of my condition. From a sweetheart, I am now a bitter individual. I cannot fully discuss my condition with friends or family because they don't understand what I'm going through and have gone through. Sometimes, I wish this nightmare was over And I can wake up and be who I used to be. Fun, loving and caring. Right now, I'm almost the polar opposite of what I used to be. I don't know what come over me today, I was on RU-vid watching a video based on "floaters" which is an eye problem and that prompted me to search for information on my cone dystrophy condition which then led me to your video. Just became curious to what you had to say. It touched me. Reminds me of all the thoughts that were running through my head when I experienced difficulties. I could go on and on and bore you lol.... but I'll be quiet and say thanks for sharing your story. I hope there is a cure available for you as well as myself and others out there who are visually impaired. I wish and hope nothing but happiness for you. Stay strong and be hopeful for a cure. ♡♡

@nazanvisions 6 лет назад

Mohammad Uthman you can still be tha fun, loving person that you were! It’s super hard I know, but imagine this as another chapter of your life. What I always say to people is ‘if you were the author of your own book, where would you want the next chapter to go?’ It’s pretty powerful and reminds you that you are in control of you! I’m glad that you could relate :) my parents are always like ‘oh we are hoping for a cure’ to, but the thing is, we really shouldn’t be waiting around hoping there is going to be one, as time is precious, life is so short to wait around for something, especially if it’s unlikely to happen, so you know what I mean? I wish you all the best and happiness Type in ‘miles hilton’ on RU-vid and you will find a speech that he performs, it will have you in tears and you’ll realise that you can do anything you want to, even with our condition. That video changed my whole perspective on everything! Good luck Mohammed! :)

@mohammaduthman1983 6 лет назад

Naz thank you once again... for a young head you give a powerful message and I really appreciate what you are saying. In a weird kind of way... I'm glad that there's someone out there that can relate to me so thank you too much from the bottom of my heart. And yes I know what you mean when you say your parents are hoping for a miracle cure. Mine are the same and you are right about time being precious. Time is a commodity that we take granted for. I think you are right... time for me to roll up my sleeves and get out there and be myself again. A new and improved version. I think I'll be like daredevil lol.... kick down the barriers and insecurities that surround me. I'll check that video out too. Thank you and have a great day ♡

@nazanvisions 6 лет назад

yay! that's the spirit! So glad that you are inspired by what i have said. Good luck on your journey to a healthier mindset- don't listen to your parents, they're in denial like mine. your condition makes up who you are, shape your life around it positevely, don't let it rule you negatively, you're in control of your life, not your illness! Take care, and all the best, Naz :) x

@soniaherrera1617 6 лет назад

You just told my life story. I have the same condition as you

@nazanvisions 6 лет назад

Really! What are your thoughts about it? What are your difficulties and do you hav support around you? :) Thanks for watching! :) it's nice to know i'm not alone!

@soniaherrera1617 5 лет назад

I’m still in the process of accepting my reality. I feel like nobody understands me. I’m sure you understand me just like I understand you.

@nazanvisions 5 лет назад

@@soniaherrera1617 Yes, i totally understand you, and although it feels like no one else understands, lets try to not expect them to, otherwise we setting ourselves up to be sad right! I don't think anyone who doesnt have a visual imapirement condition can understand what we go through! I have a councellor who's visually impaired, which really helps to! Research a speaker called Miles Hilton, he's very inspiring, and i'm sure his videos will help you alot!

@tazeennawaz1437 2 года назад

Same condition

@ROBERT17321 2 года назад

Thank you so much.. I have cones ... and I'm frustating to explain... I have them watch your video... You explain it beatufulily... thank you dear.. stay strong and as well I am also,, This has made me stronger as a person

@nazanvisions 2 года назад

Thank you so much for your comment, I'm so glad that this video has helped you! My latest video (Disability awareness panel) may be very useful to you swell! Best of luck to you!

@theprince_101 2 месяца назад

Really encouraging video…..I also have cone dystrophy and some days I just wish I’ll get hit by a car and it will all end but somehow I’ve been able to make it this far 🤪

@nazanvisions 2 месяца назад

@@theprince_101 I’m glad you found this encouraging! Living with a health condition can be very challenging I know. I now teach blind people yoga :) it will take time to think positively about it, but keep your head up, and allow yourself this process you’re in, it will make sense in the future :) if you see my newer videos, I’m very positive about my sight loss and I now see it as my gift. Don’t let society isolate and stereotype you, because you are not just a condition, you are much greater than your fears and worries, and the grieving behind this condition. You’ve got this, no jumping in front of cars !! I’d advise joining the cone dystrophy groups on Facebook and sharing your thoughts and feelings on there - there will be people there that you can connect with to help you during this process 🙏🏻✨❤️

@tadleyironwood7595 2 месяца назад

I feel your pain girl. Been sufferring with RP . I find it crazy how there are no treatments in the clinic yet. They can make cone and rods photoreceptors from scratch for years now . This kind of thing needs a bigger push.the technology is there . Elon is gonna have mars populated and there still gonna be in a phase 2 trial...rediculous"

@nazanvisions 2 месяца назад

@@tadleyironwood7595 haha the bit about Elon made me laugh! Well even though there isn’t any treatment, we can still find ways to manage it to boost our quality of life. There will always be challenges but we are strong and can deal with anything that is thrown our way! This condition has really tested me but built me up to thrive in other ways. If you see my latest videos, I’m much more positive about it than I am in this video! Thank you for taking the time to watch and comment though. Best of luck ✨ You’ve got this!

@ekrbk8038 Год назад

I am having the same situation as you. I am 29 years old and it was not easy for me to get used to this situation.

@nazanvisions Год назад

Hello! It can be really difficult to come to terms with, we are all on a journey that includes life’s trials and wonders! I used to suffer a lot with anxiety and acceptance of this condition but if you see my latest videos, I express my situation in a more positive way - I hope they help in some way, if you get a chance to view them. Good luck on your journey, you are not alone :)

@ekrbk8038 Год назад

:) Teşekkürler Nazan.İyiki varsın

@unknown-ds1wi 3 года назад

Hii iam suffering from cone rod dystrophy can you plse tell me how I can make my living

@nazanvisions 3 года назад

Hey - the only limitations you have is the ones that you create yourself! You can achieve anything that you set your mind to. Don’t let your condition / conditioning define a trapped path for you. Believe in yourself :)

@cathyperry7834 2 года назад

I have it also...how can we continue to work?

@daniehollen4183 2 года назад

I previously replied to this video. I have CRD at 75, vision getting worse. I am home with a roommate. My friend who is healthy thinks i need a psychiatrist because i dont want to go out and do things. I cant see in the daylight, i need two new knees and a hip, can barely walk, and have anxiety and depression. Anyone out there like me, and what do you do? My eyes are now beginning to ache from straining on mt ipad. People dont understand

@nazanvisions 2 года назад

Hello Danie, thank you for sharing! throughout the years of healing work, I've realised that we share this 'not feeling heard' feeling almost universally. I also have chronic pain, and through therapy, I've learned that pain cannot be communicated but it can be expressed. Do you have a creative outlet? The reason why people don't understand us is because no one lives the life that I/ you as individuals live. We are a sum of our DNA and experiences and that's what makes us unique. losing our mobility or one of our senses can be debilitating and I too feel so frustrated when it is dismissed - you/ we are only human. I hope that find strength within yourself and realise that life happens for us and not too us. For example, if I didn't have chronic pain, I wouldn't stop - it somehow helps me regulate my life so that I am forced to rest and priorities what matters and only say yes to things that I really want to do and have the energy for. My eyes, on the other hand I am grateful for because it prompts me to see within (spiritually). I could go on and on about all the things that have helped me have a positive outlook on life (even with pain), but I'm coming t can understanding that everyones journeys are so different. My advice would be to try it all, and see what works for you! But allow yourself to grieve! This is a process not a product :) You are far greater than your physical body and all your fears and worries. Meditate, go within, ask for help, and yes - do the therapy !! We all need a bit of therapy in our lives!! :D I hope my words have helped you and I you would like to know anything more about what therapies I have found useful, book suggestions or anything else, I'd be more than happy to share, take care, and give yourself a hug! Keep affirming to yourself that you can do this, Nazan :)

@breadboy102 5 лет назад

I know exactly what you are talking about I have the rides but I don't have the cones so I don't have the knife line that's but I do have the day blindness

@nazanvisions 2 года назад

sending love and respect to you

@danabelden4492 2 года назад

I have RP some of that sounds like it but I know it's not

@nazanvisions 2 года назад

They're very similar!

@bethanyfischer2666 3 года назад

I hav cone rod dustophyband feel similar anxieties. Honestly, please message me I'd you need help. 💗

@nazanvisions 3 года назад

aw bless you, thank you !! Hope you are finding ways to manage ! Thank you for your comment

@nicolasrada1325 Год назад

I have a peripheral area of my vision that its like an scotoma in which inside Im pretty much see in black and white and during the day that area becomes completely black and I cannnot see through, did you experience something similar? my central vision and the rest of my vision is 100% perfect

@mahsunmahsun9154 2 года назад

hello .i have same problem from 2011 ...i dont know if you try the canada or indai treatment ...there are many good feedback from people so i hop can get there one day to get treatment ..in canada quite expensive in indai cheap . thabks for video .

@nazanvisions 2 года назад

Hello! I am unaware of any physical treatments to be honest, and am more motivated to treating and stabilising my mental health more than anything. Mental / brain / inner work through self help books, yoga, and reading / practising spirituality has been my main focus in re - wiring my mind set around my eye condition. Think of your condition as a gift rather than a setback, - don't wait for a treatment, as that is trying to control something that is out of your control. The only thing we have control over really is our perception on this eye condition and the ways in which we can use it to enhance our life rather than drain it! Hope this helps, and good luck on your journey!

@kochamnoc334 2 года назад

OMG. Your live must be horror. I feel sorry for you.

@nazanvisions 2 года назад

abosuletly not! It is not my condition that is disabling - it is my environment. I feel sorry for people who think having a disability is the worst thing to happen to them. My life is not horror, and I am living in harmony with my goals and dreams.

@QueenOz 6 лет назад

Ok, first off, please put a pin in your hair, so it’s not in your face all the time. The eyes tests you describe are uncomfortable but they don’t come under the category of “horrible “. You are not the only person in the world who has this as paper of their everyday life. Accept you vision loss and embrace all the other things in life that you have, you’re a very lucky young woman, stop the pity party and get on with living.

@nazanvisions 6 лет назад

There's no need to be rude. I think you've missed the whole message of my video. I'm sharing my story so others can feel comfortable about sharing it to.(maybe you should read the comments above to see how much i've helped some people). As for 'putting in a pin in my hair', that doesn't neccesarily make my vision better lol. You obviously haven't watched the whole video-I am accepting of my condition and i embrace it as much as i can to help others accept theirs to as a part of who they are. Are you joking?-The eye tests are horrific-horrible was an understatement. Please, if you have nothing nice to say, don't type shit behind a screen, cheers matey

@chilloutbro606 5 лет назад

That is so rude , she is explaining how truly hard it can be with poor vision. She is not having a pity party whatsoever . I do not have vision as poor as Naz but still I struggle with every day things so I at least somewhat understand and can totally sympathize . Vision is so important and people take it for granted , just like I take my hearing for granted . Poor vision really makes for a difficult life , really hard. And you must rely on people a lot and be dependent. It's scary, she is a brave girl to go out and tell her story .

@nazanvisions 4 года назад

Dylan Harris thank you so much for the back up! Just seen your comment now! 💜

@alexandre5236 5 месяцев назад

Heyyy I literally have the same thing never met someone with the same problem, I would love to talk can I get your email, I have Instagram deactivated because of uni