LIVING WITH KERATOCONUS | KC Diaries Episode 1!
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- เผยแพร่เมื่อ 6 ต.ค. 2024
- Hi Everyone, thank you so much for your support from my first video!
Here is the first video for my new series of the KC Diaries. Living with Keratoconus is such a struggle, so I wanted to share my journey with you all.
Let me know what you think and leave a like on this video :)
Music: Carefree by Kevin MacLeod is licensed under a Creative Commons Attribution license (creativecommon...)
Source: incompetech.com...
Artist: incompetech.com/
Filming Equipment: Samsung Galaxy S6 Edge
Editing Software: Lightworks
Follow me on Facebook & Twitter: Natasha Smith or Nashaax3
It's great seeing someone giving an insight. I've been living with the condition for a year now. Got diagnosed around 3 years ago. The first two years was very hard, hence many surgeries, and tests. When I turned 18, I got my contacts lenses and it changed my life. I went from 25% vision to 80%! It's amazing to be seeing again :)
So, if you have recently been diagnosed with KC (short for Keratoconus) fear not! Learn from others experiences, and remember you are not the only one :)! It's very important to keep your moral high or else it will be a hard run.
What lense u r using right now??
@@lavikadas3032 Scleral lenses. They are very comfortable. But i can only wear them for around 8-9 hours at a time. Which limits my everyday life serverly. But this type of lense is what I would recommend you. If possible get a pair of glasses, that you can use after your lenses! Good luck! :)
Please share your contact number pls
I WISH it was as easy as wearing glasses and being able to see clearly
I was diagnosed with keratoconus less than a week ago. I've been wearing glasses since I was seven, and they never seemed to help. With my strong prescription, I was still unable to see small print three feet away from me. It dramatically effected my school progress. My dad scheduled an appointment for me, and I got many tests done. The doctor said that there was a good chance I had keratoconus. She said that glasses probably aren't even an option for me, as they weren't doing much help at all. It definitely let me see better within a couple feet, but it didn't help me read a board in the back of a classroom. She also explained that I wouldn't be able to use soft lenses, or, normal contact lenses that are disposable. Instead, I would have to wear hard contacts, also known as RGPs. She said the price range would be a couple hundred dollars per lense, which wasn't much trouble for my family. My dad soon got a call for more information on the lenses, and said that it would cost $2,300 for both lenses. This was more than five times the amount the doctor said it would be, and my dad isn't able to pay for the lenses. It really upsets me, but I'm also happy that I finally was given an explanation as to why I'm not able to see properly, even with strong prescriptions.
I've actually just done the cross linking last Thursday and it's really not painful, just really uncomfortable for the first 2nightish. Need to heal so I hopefully do it in my right eye now. Good luck
Have diagnose with keratokonus in 15-16 years old. Now i'm 27. Have had corneal transplant for right eye when i was 21. After 1years+ received scleral lense for transplanted eye - vision 100% no pain. The left eye should have also a surgery but its very hard emotionally for me:). Im from Lithuania, working some nurse (man) in Norway ( have learned Norwegian language with keratokonus ) and playing music also with keratokonus. I got a lot motivation from keratokonus to be what im are now. Just want to see dont give up, i know and life sucks but all depends from us. Recommend finding the solution in europe. Have paid 400eu for 2 scleral lenses in latvia. I thinking the same is in poland, uk and so on.
Same for me
Severe keratoconus in my right eye, I have to have things right up against my face to see clearly with it. I wear an eyepatch to prevent it interfering with my good eye which has been working really well, I see much clearer and have no headaches with the bad eye covered.
My doctor thinks mine was caused by complications from Laser Eye Surgery.
Tired of living with this condition 😔
i've started studying the bates method, he believes all eye refractive issues are muscle related and can be naturally resolved, in other words myopic and hypermetropic are basically tense eyes muscles, but I've been trying to work the cilliary muscle of my keratoconus left eye, reading far and near and I am getting some improvement. I will put this eye through boot camp for the next year and see how much I can restore the acuity of it.
Hey how much you restore?
I developed keratoconus at 38 years old which is odd. Before that my vision was perfect. Finally went to go get glasses and they did not know that I had keratoconus apparently. When I could not see still they said your brain just has to adjust to the glasses. I had a bad bicycle accident while wearing my glasses. Went back to a different doctor and he immediately asked me how long I couldn't see. He knew I had keratoconus. I have sharpened my observation skills so that when I see someone from a little distance I can tell who it is by the way they walk at work. Or listen to The Voice or listen to the speed at which someone walks or how heavy or light they walk. Or basically just observe how someone carries themselves and I just wave and smile at everybody so nobody thinks I'm ignoring them. I'm going back to the doctor maybe there is something they can do for me.
Do cross linking in both eyes than buy lenses u will see great I also have for almost fifteen years
@@matchlesstruth6811 thanks for info usman.
I understand you brother i experienced the same thing...i think your brain readjusts to make your other senses more sharpened..i pretended to smile and shake my head at everyone so i wouldn't seem socially awkward but in the end i realize i am a visual learner so i depend on my sight to get things done
I just find out I am diagnosed with KC
It’s sucks no doubt
I am been searching a lot
CROSSLINKING Surgery and all
Also I find out the drops are in piple line to reshape your cornea without any surgery
But Untill then I was thinking to get Cross liking
And also thinking to get intacts
Thanks for this. I also.suffer from keratoconus and it actually sucks. Infact am expected to do a cornea transplant next month
Really nice video
Had one query if someone can help
The person diagnosed with keratoconus has been treated with C3R in both eyes 3 years back
Though after covid arrival hes not able to wear RGP lenses
Should he consult a doctor and get a new lens or glasses are just fine?
Just did collagen cross linking on my right eye. So far my left eye is fine. Hopefully it doesn’t develop KC anytime soon. CXL is expensive and really uncomfortable. Post op appointment is on Monday. Not sure yet what kind of options I’ll get in terms of lenses. Hoping to avoid any sort of invasive procedures...
I have just been diagnosed with kerataconus I'm 13 it's worse in my left eye than my right
Thank you for the positive video... God Bless...
Hi! I casually found your video. I m italian and i live with keratoconus from 14 years. I m always looking for find some one with the same disase in order to share my experience and try to learn something news about this medical disase.
Subscribed!
As someone who has pretty good eyesight , it's interesting to know about HC ! Awesome video xx
+Lucy17x ah thank you so much! Im hoping to do some more over the next couple of weeks :) xx
I got kc too.im wearing bosch rgp lenses.
It comes when scratching rubbing your eyes.but im kind of lucky.when i make my eye closed like half i see perfectly.but when i open my eye fully i lost my vision again..
Check out boxer wachler vision institute in Beverly hills,CA. People fly in to do the c3r procedure plus 2 other procedures that are non invasive. I'm going there for my procedures I already had my consult. God bless!!
for anyone reading this, you probably shouldn't wear RGP lenses, they can cause corneal scarring after a while. Try to get Scleral lenses instead if you can.
But they're also extremely helpful. I've had mine for 17 years and since then have had crosslinking and a transplant. 3 years post cxl and wearing an RGP lens qnd ive had no further scarring.
@@natashasmith3609 Thats awesome!! How did your transplant go? Do you have quality vision in your transplant eye now? My left eye is legally blind at the moment (because of KC) so I might get a transplant someday..
Hows your vision with and without lenses??
I feel your pain.. I to have kc..I tried scleral lenses at Oxford but couldn't get on with them..have you tried kerasoft?
You should not wear any type of contact lense if you have keratoconus im speaking from experience i have had keratoconus for 20 years because the cornea is weak and very thin and fragile you should nit wear contact lenses because it rubs against the cornea constantly wich makes the disease progress quicker it can lead to scarring of the cornea especialy with hard contact lenses when i was diagnosed i didnt listen to the doctors and didnt wear the contact lenses wich i was told to wear yes contact lenses will improve your vision because it flatterns the cornea but it also damages the cornea i would suggest you do cross linking and just wear glasses or get intacts but do not wear contact lenses its common sense they tell you not to rub your eyes when you have keratoconus but then they tell you to wear hard contact lenses wich is going to rub against the cornea continualy causing you cornea to get worser much quciker
sylheti123 glasses don’t always work
That would probably be true with old RPG lenses from 15 years ago. I have had KC for about 16 years now and didn't wear contact lenses for 14 of those years because I couldn't tolerate them, I have dry eyes, and I didn't want my corneas scarred. I still played sports but the last two years it progressed pretty rapid so I returned to see what else was available, during my exam I couldn't even see the largest letter. So many years wihtout corrective vision also left the muscles used for focusing useless. I still wanted to avoid invasive surgery at all cost. I was given scleral lenses which cover the eye and do not touch the cornea. Of course these were fitted to me for a period of about 6 weeks so they are custom to each eye. Compared to the smaller RGP lenses these are incredible these feel many times more comfortable and the best thing is that it feels like an additional layer of protection to my cornea. My vision with them is close to 20/20 vision for now. Because they don't move around i can wear them all day with occasional eye drops for re-wetting.
Scelara contacts don't actually sit on the cornea. Have had it since 2004. Had the cross linking and intact put in my left eye. And cross linking in my right. Now wearing scelara contacts.
Hows your left eye now ??
How long do you have to where the intact lens?
Hey natasha did you ever have cross linking?
I have this disease in both eyes . Cxl done of left eye but its too late . I am depressed . I am just 20
Muhammad Qasim don’t worry dear Your not Alone
I had the transplant in my right eye and it helped only downside u will be out of commission for a year or 2 going to get fitted for lens money not the gsp lens the new ones
Hello Brian, how is your transplant now? I heard that the cornea transplant can be rejected :( I am afraid of that
I have the same thing I fell your pain
I have this and it's wank even after a cornea transplant
There is a solution right now i was in the same situation a while ago and know there is a hybrid lenses Please check it out
Hi me too a keraticonus patient
I have had corneal transplant and after the transplant i got big scar on my cornea, will Scleral Lens work for me? Please help!
Scleral lenses are a very good option if you can find a good eye doctor as it takes a lot of effort to get the right fit.I had KC for the last 27 years and scleral lenses are
I had KC for the last 27 years and scleral lenses are the best lenses I could ever get they are comfortable and I can see much better with that.Try these lenses,hopefully it will work for you.
@@bashira1234hello, I've been diagnosed with this aswell and I'm too worried. Since you've had it for a long time now, I wanted to ask few of my queries if you don't mind. Is there a way I could contact you?
Does anyone know some good resources for advances with KC treatments?? Would be really helpful
Boxer wachler vision institute in Beverly hills,ca I'm going there for my non invasive procedures
@@mirandaharris9871hI, i am from Pakiatan i cant go there, can you please tell me, will Scleral lens work for me as i have big scar on my cornea after the rejection of Corneal Transplant?
I couldnt have cross linking in my eye cause it had progressed too far
Freeman Pullen oh bless you I was originally going to ask for my right to be done but it was far too thin too. Keep staying positive as there are so many new procedures being researched everyday. X
Kornea transplant maybe?
i am going through alot because of this kc
Muhammad Waleed Qureshi it's horrible isn't it. I'm really looking forward to getting my sclerals tomorrow. what do you have?
ShyGirl Gaming its more than horrible i have done cxl in left eye and having advance level in right so you can imagine how many moons i am seeing rightnow and i use rgp in left
Muhammad Waleed Qureshi I have exactly the same but waiting for cxl now. and right is so advanced scleral lenses I will only be able to get 20/70 vision. let me know what the cxl was like for you
ShyGirl Gaming basically cxl will not improve your vision it will only prevent kc process and my cxl was great as now i am feeling hopeful that this kc will not peneterate in one eye
i m going for c3r next month
mayank hows u now?? Can u share ur experience plz