Speaking with keratoconus patients about research and treatments

[@mianmuhammadsikandar9166]

I just had my keratoconus surgery last week and it was hell of a pain. Now, I am feeling better.

[@dutto78]

Hi there, IV been thinking about surgery it's a scary thought. Iv only had scleral lenses 4 about 6 months probably should of had them years ago, have you try the scleral lenses or did they not work . I'm from Australia and have found it hard to talk to people with my problems, other then doctors . Which they really don't know what we go though.

[@Femmefatale1990]

Oh, no for how long?

[@KRINZKOLO]

The pain after CXL was damn hardcore in your face intensity. Worst pain I’ve ever felt but worth the 48 hours of suffering for sure.

[@celieboo]

I was diagnosed when i was 14. I had a cornea transplant in my right eye at age 22. I an 43 now. My viggest peobkem now is the fact that I can't find an ophthalmologist to follow me here in Indianapolis. The cirbea specialists only want to do surgery here.

[@naznin_m]

Go to other good city/country for treatment.

[@Elvisnotpresley97]

I know I’m really late, but if you haven’t look up dr Brian boxer wachler, he treats keratoconus with his intacs and he developed his own cross linking (which is epi on) he’s located in Beverly Hills, I got 3 procedures done on me june 6th 2024

[@Ayylex]

Fund more of this research because my eyes suck!

[@5678plm]

haha... same condition here

[@salvadorguntherr9673]

Lololol

[@HereDiianas]

Everyone who struggles or gave up on hard contacts SHOULD try scleral contacts. They are so much more comfortable. I wore hard contacts for 20 years but a few months ago only my new Eye Dr recommended me Sceral contacts and that was game changer for me!

[@danielacoelho1820]

Thank you for the information,I am going to have a cross linking procedure next week, I can’t wait to experience a better vision .

[@zaythemayor2254]

Having this disease really sucks

[@heithemazzain2373]

Please please please go get Cross linking done and find a doctor that will get you scleral lenses. I’m 20 with raging kerataconus it blows but it’s made my life so much better

[@KRINZKOLO]

Hell yeah it does but at least at night time if you have triple vision KC it’s totally psychedelic. It’s like free mushrooms.

[@mubashirali5258]

Suffering from this😢😢​@@KRINZKOLO

[@mubashirali5258]

​@heithemazzain2373 bro i have kc done cxl 2 years back now i m seeing double vision specialy at night 😢😢

[@luciasaunders9736]

I had to have transplant of my both corneas...and now, 15 years later, I have to have transplant of left cornea again. Fortunately, here in Toronto, Canada it's OHIP covered surgery and it's done excellently. Still, recovery is quite lengthy, anywhere from 8 - 11 months.

[@dutto78]

Scleral lenses have give me my eyes back but 4 how long I don't know, the worst thing about this eye disease is that you get no government HELP with the problem, I just don't know how long they will last Only had them 4 about 6 months now, for some reason they don't think it's a disability to lost your eye sight, but with no help we lose our sight a lot faster and years 2 come a lot of us will need cares to help us get though life. What iv found is dusty areas and the smell of petrol or paint effects my eyes a lot , which makes it harder to get back into the working game. Specially when you work on the tools.

[@yasseryasser2748]

It is my great honor to see this very informative video, especially appreciation and respect to you sir. My only wish in my life is to travel to you for treatment and help me get rid of a difficult life full of desperation and frustration that is killing me every day because of the suffering I am feeling. 😔

[@LauriePrevish]

I hope you were able to address to congress the assistance in financial aspect for us patients...as an average citizen I cannot afford the care or treatments for this despite having insurance...so I'm as about as close to blind as can be.

[@fredrickgithui827]

Have lived with Keratoconus for the last 22 years to make matters worse in Kenya we don't have many facilities that can handle Keratoconus

[@mariannekoech1438]

Hi I am in Kenya and was able to get help for Kraetoconus There are couple of facilities that i have helped so far

[@nikkik5606]

Jesus opened the eyes of the blind and is still doing it, have faith and run to him. God bless

[@pininolfg]

I got double Transplant with my Keratoconus, and cant see out of my right eye very well even after sux I miss being able to drive.. wish there was somthing I could look into to fix it

[@saikrishna8899]

Night driving is hell with keratoconus😢

[@nikkik5606]

I thought l was the only one struggling, even affecting finding a right job

[@debbie3779]

I just found this channel and l have had cross linking in my left eye and was told the other eye can't be fixed because it bursted and that l should go for conial transplant suggery in India, unfortunately our government can't sponsor us and l can not manage to source funds for the surgery,if there are any help l could get from any of you doctor s l would really appreciate it,lam from Malawi and my eyes are really bad right now lam afraid l may become blind

[@Okaybiebie]

Transplant here would be very cheap in India (aiims delhi=best and biggest govt hospital and cheapest) , all you have to manage is travel expense,

[@Karna540]

I want to see 6/6 without contactsl lenses...CLs are cosmetics...i want treatment son eyes which can make our keratoconus vision see 6/6.

[@owenholmes8793]

Can anyone tell me whether Athens Protocol procedure in done in the USA? How beneficial is this?

[@josecavazos1869]

The only doctor that I know who does it in the USA is doctor motwani in San Diego California. I did it with him. I do have some ghosting but I can honestly say I can live my life comfortable without glasses or contacts for the rest of my life

[@fortnite_clips1064]

Is the procedure expensive?I have keratoconus😒

[@josecavazos1869]

@@fortnite_clips1064 10600 dollars

[@americandude3825]

@@josecavazos1869 I’d pay $10,600 if I can see again. I’m only 36.

[@josecavazos1869]

@@americandude3825 you should go there. I have no regrets. I hated living with those scleral and hybrid lenses

[@mithunjr10]

after c3r surgery i feel progressing vision blurring what can i do😭😭..... Left eye 6/6 vision, but now its blurring 😭😭😭😭😭😭

[@mubashirali5258]

@@mdmd-un2gd same here after 3 months of c3r😓

[@Sendmelvyn]

I suffer from this and have no help around me here in florida

[@massirachedi6601]

Hi. I'm patient of this accursed disease 3/4 in the right eye and 2/3 the left eye and would like know if in USA they help for this keratoconus for strange people because I really need fix this problem live with this keratoconis it like a hell

[@Sendmelvyn]

@@massirachedi6601 realistically there is no accesible help, im struggling with it with one eye that barely sees and the other one completely useless

[@aniketghosh3159]

I suffered from keratoconus onn my left eye in my teenage years.There is a procedure called collagen cross linking which fix up to mild keratoconus.Even after the procedure dont think it will get cured,wearing glasses and contacts all the time will help recover very much. My left eye recovered a abit but not fully after the surgery. The results of this surgery generally vary to individuals.

[@so_cal_mom]

There is help. My son was basically blind i. one eye but he has cross linking done and has near perfect vision with a scleral contact lens.

[@Sendmelvyn]

@@so_cal_mom ok if you say so

[@aden1430]

Is life even worth it anymore being cursed with this sucks

[@Gupi_777]

This condition sucks 🤓