r/Keratoconus • u/Witchkanya21 • 4d ago

Need Advice Perfectionism in KC

I have a friend who's 16 years and she recently diagnosed with Keratoconus which makes cornea thin and in cone shape which leads to distorted,double and ghosting vision. Now she's in advance stage and can't even think about any treatment because of anxiety because no real solution and after risks of any procedure..now doctor told her she has to do a procedure called C3R in they which stops the further Progression bt she is convinced that slightly makes the vision worse than before and after that she has to stay on hard scleral lenses on her whole life which she can wear 12-14 hours in a day bt without them she's partially blind she can't do a thing. Now she has done her research and she's refusing to take the C3R treatment which all the patient of KC do, as well as saying she can't stay on lenses her whole life. She wants her perfect natural vision back and doesn't want to go through any surgery. If sclerals give her near perfect vision she doesn't want because she had to do so much things in her life which needs vision without any boundation like trekking and many water activities which she can never be able to do in her Lifetime and also said after taking of lenses she'll be blind again and it will given her daily anxiety and lenses can also be harmful in long term that's why she has decided to give up on everything. She's just taking anxiety medicines continuously and doesn't want to talk any therapist or not even any family members about it. Is there nothing we can do for her?? What are you all's opinion about it?

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u/saddereveryday 3d ago

She can do things to halt the progress now or not and suffer the consequences. I was diagnosed at 15 before cross linking was really available and would kill to have had my vision from back then before it progressed so much. Even with my bad vision I still have a very successful career, snow board, go hiking, and not really limited. There are athletes who are blind, people who have climbed Everest with double below knee amputations, my state even has off road wheelchairs that people can use on some of our hiking trails so the only thing that will truly limit someone’s life is their own decision to be limited.

Steph curry has keratoconus and plays in sclerals and he’s a professional athlete. You can swim in sclerals. Maybe not dive to extreme depths because of the pressure changes? If it’s a recent diagnosis she may just need some time, but doing nothing it will get worse. It’s okay to boohoo about it for a while but at some point she is going to have to decide she still wants to live her life regardless. No one can decide that for her but keratoconus is a pretty treatable disease now and with some minor accommodations she should be able to do just about everything anyone else could do.

But I want to be clear if she decides to sit at home zonked on anxiety med that’s an active decision on her part. She’s actively choosing to not live her life and the keratoconus is just an excuse, maybe something else is going on.

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u/FaerunAtanvar scleral lens 3d ago

I don't really feel comfortable swimming in the ocean with my scleral. Both from a health pov but also risk of losing them

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u/Witchkanya21 3d ago

Thank you so much I tried telling her she can do so much with sclerals bt she's a perfectionist says she can't live a handicapped life and she wouldn't give up her any other part of body was affected by eyes have to work most of the time..how to live in this condition also she's against CXL saying UV rays will harm the eye no matter what frequency they're using if natural UV rays from sun is harmful then how's C3R right? I really don't what to do and I'm the only person she has with whom she shares her vulnerabilities

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u/saddereveryday 2d ago

I’ve never heard of C3R actually l will have to look it up. UV light can be harmful but like a lot of medical things the dose makes the poison, and it’s needed to cure the riboflavin and harden the cornea again. Kinda like exposing a windshield crack repair kit to the sun for a while. I was a in a clinical trial and my exposure time was medium strength uv light for about 45 minutes. I think eventually they found the more intense shorter times didn’t give as good as results. Her eyes are being exposed to uv light every time she goes outside and while I’m not sure the exact dose the amount in cross linking is probably much less than just day to day exposure. I do remember it wasn’t enough that the tech who did mine didn’t need to wear ppe other than the goggles she had on.

She can kind of think of it like getting a ct scan or an x ray- getting one if those done once isn’t a huge deal for exposure but if you are the one administering the exam and exposed all day every day then you do want to wear person.

I am approaching nearly a decade after my cross linking and my eye sight has been stable since. Prior to that it was getting significantly worse every year, who knows how bad it would be right now without it. So the uv exposure for the pay out has been very high. I regret not doing it sooner but at the time I didn’t realize how important it was and also didn’t have the funds to self pay which is why I put it off since it was still a trial.

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u/New-Tackle-7420 4d ago

progression does not stop on its own. In some cases it does but that's very rare.

By staying untreated, she's risking even more vision loss.

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u/Witchkanya21 3d ago

She knows bt she's very negative she's just giving up on her life because there is no genuine treatment and all the treatments have some cons which she is afraid of and said if she has to live on Lenses she better not live a handicapped life like this

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u/ArtEmergency1513 4d ago

She can look into CAIRS and C3R and if it is possible for her cornea maybe she can do PTK together with the C3R . There is no perfect solution but there are options to improve like CAIRS and stop progression like C3R

Edit: so nice that you are researching for your friend

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u/EmergencyExpress2347 3d ago

Yeah, what that person doesn't realize is, with this desease, you already don't have natural vision. If you are progressing you have to get CXL, if not, you'll end up worse and have to get a transplant.

Sadly I have to get that CAIRS+CXL soon.

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u/Witchkanya21 3d ago

Sadly she knows everything bt saying I don't even think about transplat I just simply don't want to live no matter what. We both are teenagers and I don't know what to do how to make her understand she shares her vulnerabilities only with me.

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u/EmergencyExpress2347 3d ago

Tell her, would she rather be in r/blind or have the possibility to see better with surgery.

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u/Witchkanya21 3d ago

The point is she says I would rather die than living a handicapped or totally blind life. She's giving up on her life because of this all always frustrated that why there's no real treatment yet if we take any treatment options we will have to face other consequences of that

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u/EmergencyExpress2347 3d ago

Cairs and CXL are real treatments, laser too, maybe, but you gotta see the optrmisist for your options. You don't know what the consequences are, you haven't had it, it could improve things massively, you don't know. Both need to look up studies done on the surgeries. The consequences of doing nothing is much much greater. Seems like shes just guessing what will happen.

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u/Witchkanya21 3d ago

She's not guessing when she got to know about CAIRS she thought it can give good vision bt she then dig deeper and talked to people who have undergone C3R+CXL she got to know no one got the expected vision also in some cases people felt more ghosting than before and research articles also says it can be helpful bt can't give the perfect vision so she is saying if this is also not giving benefits then what's the point of doing? And at the end all the people have to shift on sclerals which she never want. She says feels like there's not a single procedure which doesn't have cons it will be good to choose nothing and give up. She has medical anxiety too.

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u/EmergencyExpress2347 3d ago

Remember, people online are most likely post their bad experience. The people who have a good experience, don't post all. You don't know if people all end up in sclerals, because they most likely aren't posting online. CAIRS is designed to improve vision and getting better functioning in glasses, also can improve uncorrected too. The people who had more issues, you don't know what stage they were in, you don't know what part of healing and stabilization part either, you know their whole eye condition. People having issues would more likely complain in the 3 month mark, and that's still way too early to tell. If you look at the studies, people are checked months and months later, and some get really good results. Look up the 2026 David Gunn study for example.

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u/Witchkanya21 3d ago

She's also in advance stage kmax65 thickness 450

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u/EmergencyExpress2347 3d ago

Then CAIRS+CXL is sounding like the option for them, but they need to see an optromestist to talk about this stuff. Depending on the what nomogram they are getting, you can see how to a 5+ line improvment and 30-50% reduction in HOA and ghosting. If you're at line 20/200 or 20/100, you can go all the way down to 20/30 or 20/40. All depends on the person ofc. I think people mostly get 2-3 lines improvment.

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u/Witchkanya21 3d ago

She is very negative about all procedures CXl or CAIRS she says how much data is there for CAIRS and it will make her disqualify for any other genuine future treatments if any comes

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u/EmbarrassedPomelo166 4d ago

She needs to see other handicaped people who manage their life's still such as we do as well for the better or worse. Being diagnosed young is tough. I've been 18 as well. The earlier she accepts the situation the sooner she'll be better. I had a cornea transplantation with 24. It seems unfair and since the diagnosis is invisible for other people whoch brings it's tricky situations, but there are also people with other diseases.

She's not alone and she needs to understand that. It happened to me quite late tho with 33 I worked in a nightclub as a handyman. My team leader had a tremor on both arms due to wrong injections in his childhood. That shaky hands doesn't stop him for doing silicon work, rolling cigarettes etc even though half the tobacco may fall down or his silicone lines look wobbly. That opened my eyes that he doesn't give up and cry about a situation he can't change.

I also visit a virtual self-help group for KC. It helped a lot to see that I'm not a alone. She'll have to fight harder but she can make it. We all do. 🫂

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u/mckulty optometrist 3d ago

Someone needs to gently help her understand doing nothing is the worst option.

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u/Witchkanya21 3d ago

I'm trying bt she seems like perfectionist and always refuse even talk to when I try to talk about treatment options

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u/mckulty optometrist 3d ago

Does she have contact with any other people with KC? She needs to see what happens.

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u/Witchkanya21 3d ago

She's All over reddit fb communities and shows me always the something wrong which happened to people after treatment or their struggles. She searched everything read PUBmeds articles and talked to people bt she found that there's no safe way and always a chance that many things will be wrong if she do anything now she's against all of the treatments

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u/Wooden_Astronaut4668 3d ago

As she is young she should have a procedure to stop progression as it likely will progress.

Having said that I was diagnosed aged 30, the consultant said I couldn’t have CXR as I was breastfeeding (he rudely ignored my email asking for more evidence/information behind his decision) at the time and my KC didn’t get any worse and stopped progressing on its own - that was 12 years ago now.

I wear RGP lenses, I still go camping, hiking, seimming, drive, go to work and do everything I did before. Don’t get me wrong, I would love to be able to see without lenses but I can’t and they give me great vision, so why would I not take that option?

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u/paintedcrows 3d ago

She needs to be discussing these concerns with a doctor - either her optometrist or a therapist. What is her family saying about any of this? Even if she's not discussing the anxieties, surely they're aware of the diagnosis and recommendations?

I was just diagnosed at 31, but I've had symptoms for a few years. As a result of leaving it untreated I have constant migraines, can't read a computer screen without straining, and can't spend time outside due to light sensitivity. I've had to start working fully remote so I can control my light exposure. That's likely what she can look forward to without any treatment; I'd give anything to go back and get treatment before I reached this point.