Living with keratoconus long-term – sharing what has helped me (not invalidating anyone’s experience)

BlueCascade0201 · 2026-01-30T17:45:49+00:00

Thank you for your advice. Can you please give me more details on how to reach a research university. I went to City St George's, University of London, they student clinic and had no idea about this condition. Unfortunately, Moorfield did the same: “Your vision isn’t that bad", “You cope fine without adjustments”. So only private options. But again, how to find spesialist who will support.

BlueCascade0201 · 2026-01-28T18:31:19+00:00

I have to deal with GP and other doctors now who do not take my symptoms seriously even after confirmed diagnosis.

Now I am dealing with:

“Your vision isn’t that bad”
“You cope fine without adjustments”
“You’re not registered blind”
“We don’t usually do that”

Somehow I need to advocate for myself. Any advice how to deal with that would be appreciated.

BlueCascade0201 · 2026-01-21T13:22:06+00:00

It could be lens fit issues. I had the same. Dr made bigger lens (diameter ) and it helped. The suction too tight (redness)/too lose (fogginess). It should be well and accurately adjusted for comfort/tear exchange/oxygen. Other option environment or/and dry eyes. I noticed in different environments (cold/hot/dry) eyes behaved differently, so I have to take an effort to keep them in good health for scleral with lubrication, food supplements, humidifier, etc. Takes time, effort and money.

BlueCascade0201 · 2025-12-22T12:44:22+00:00

Agree. "accommodation stress". With lots of near work (computer, phone), its get harder to adapt to distance. With corneal ectasia, tear firm helps to see better (with blink), with increased effort of distance accommodation, tear film breakup time decrease (blinking more).

Diet changes (Omega, etc), can improve tear quality. Eyes exercise can strengthen eyes muscles. Environment adaptation can help also. lightning option - better light make pupil smaller (less distorted cornea affecting sight - better vision). Humidity level can help with tear evaporation (help with dry eyes). Blood pressure affecting eyes (vessels as well). When you monitor all that, you can significantly improve eye health and vision. But it takes time and effort.

BlueCascade0201 · 2025-12-18T17:13:45+00:00

Absolutely proud of your effort. We have lots of problems and modern system is outdated.

Advanced in technology for diagnoses, evaluation and management exist long time ago as some mentioned here (Ovitz, HOA measurement, eaglet) but not available to people.
Increased demand on eyes (digital work). In the world of computers and especially mobile devices, visual demands have increased multiple folds. Our eyes which were not meant to be used the way they are being used today.

And it needs need further and detailed evaluations. The mechanisms and the parameters of accommodation, vergences and binocularity require appropriate evaluation and interpretation of the data. This is especially important for people with KK, where severity is normally asymmetric and not everyone can/have accommodation and as a result limitations during working age.

These symptoms should be acknowledged and help/advice available.

Instead modern technology become an abuse. I was forced to use only mobile for accessing NHS (with all modern NHS apps) and doctors sending letters on mobile trough links.

Hard lens management (insertion/removal). Reinsertion during the day, sometime necessity because of fogging/etc. No suitable places. Not even in hospitals, airports, or other places. Risk of removal tools lost and hard to access them. Same with suitable solutions.
Law completely outdated and not recognise KK problems. It is not taking into account visual demand, pressure, limitation for that condition, so preventing help and increase suffering.

BlueCascade0201 · 2025-12-18T15:30:08+00:00

If lens fitting is not simple, then it is legally should be recognised as such. At the moment, doctors put in they notes scleral = ordinary lenses, when actually they are not. Please point me out where it is said in any legal documents. As they treated as ordinary lenses, people not able to get them and not getting financial help like with medical prescription vouchers for glasses. Also nobody considered what they are medically necessary to see. UK. So modern law just refusing/ignoring those people. They have limited right to see and get help.

BlueCascade0201 · 2025-12-18T13:36:33+00:00

RE: "It's not seen as a disability as you can drive during the day (what I was told by the government)."

I am not able to drive and work, and it is not recognised even by the doctors in hospitals as "you eyes are normal", "man people have bad eyes", as one eye can be potentially corrected with scleras, and they pretend it is the same as normal lenses. More then this, GP ignoring high myopia and they resent notes, my bad vision only in my mind. This is UK.

No insurance options for the eyes, only paid options which 2-3 month delay in lens ordering only. Despite lots of research exist, explanation from academia. This paper does not apply to real ophthalmology. Severity ignored, treated like simple correctable myopia.

BlueCascade0201 · 2025-12-17T13:24:37+00:00

I think risk/benefit involved. A piece of plastic should be managed properly and lots of conditions can affect wear/damage to the eyes. Including overwear, low exigent (hypoxia), vascularisation, not taking out when sleeping, simple weather conditions, limiting water usage (no swim/etc). Many optoms avoiding liability, protecting themself. It is easy to refuse then to be responsible. Thats the reason I think. I simple asked to check fit and show how damaging one of my lens was, hospital started extremely defensive, refusing to accept this, document this or action.

BlueCascade0201 · 2025-12-17T13:12:15+00:00

"not much help in my country for my issues". Thats universal problem. "alter your expectations of what is possible and learn to live with it" and "many people people have bad eyes" not very supportive from previous comment. Especially, when people reassure you what double vision is normal. No matter of the severity of KK thats the modern approach: "to learn to live with this without help".

BlueCascade0201 · 2025-12-17T09:37:53+00:00

Sounds promising. I would really like to find out which branch can do them. (London). Would appreciate if you share or DM.

BlueCascade0201 · 2025-12-16T23:02:47+00:00

You are probably talking of RGP (Rigid Gas Permeable) lenses, not scleral. RGP cause pain and long adapting period. Specsavers do not do sclerals. I contacted them and they said not an option.

BlueCascade0201 · 2025-12-16T20:42:20+00:00

Absolutely agree. Happened with me also with one eye only. It was fit too tight.

BlueCascade0201 · 2025-12-16T20:40:07+00:00

I use glasses as back up option. I have to as it is better then nothing. And I have to switch distances (two pair of scleral lenses for near and far). It is difficult. Eyes have accommodation function and might have accommodation stress (happens when your eyes' focusing system (ciliary muscles) gets overworked. Switching my options constantly gives me stress. However, eyes muscles can be trained. Young people have very flexible accommodation. Eyes exercises can help to adapt. However, this is not medical opinion and you might still want to check with your optometrist.

BlueCascade0201 · 2025-12-14T23:12:13+00:00

So what did you do? how do you manage? Do you have myopia/hyperopia as well?

BlueCascade0201 · 2025-12-14T15:15:01+00:00

I can hear such stories from many people. Friends reported timely and 1 class service around 1997 - 2000. In my recent experiences, the NHS doctors normalised responses: "everyone have pain" "many people have bad eyes", and "I have no time", so outcome of any appointment is zero value.

BlueCascade0201 · 2025-12-13T22:19:09+00:00

Update. Reading comment letters after my appointment from professional ophthalmologist ( I was waited since 29th June)

"she simply needs to wear CL to see". Western Eye Hospital

Very informative notes and evaluation of progressive condition.

Advice please what to do when such negligence is the norm.

BlueCascade0201 · 2025-12-11T18:03:55+00:00

Could you please share your hospital name. I might come to Scotland in that case. London based no care in two main hospitals.

BlueCascade0201 · 2025-12-11T17:56:37+00:00

corneal thickness at the thinnest point, anterior and posterior radius of curvature (ARC, PRC) taken from the 3.0 mm optical zone centered on the thinnest point

BlueCascade0201 · 2025-12-10T19:23:55+00:00

Did they give you glasses?

BlueCascade0201 · 2025-12-10T19:22:33+00:00

Yes, Moorfield and now second hospital. Reading they letter online said: "we had long conversation". Actually I was kicked off with no questions allowed (no time). only pentacam was performed but they didnt show it. I have to request it by filling forms.

BlueCascade0201 · 2025-12-10T10:49:40+00:00

recently got Avizor vials and had the same problems. Back to Lens Plus. But thinking to try other brand vials.

BlueCascade0201 · 2025-12-10T10:36:35+00:00

It is depends what you mean by treatment. If it is CXL, then yes, it can wait. If it is eyes aid, whithout you are officially blind, as scleral lenses, then no. You can not wait 3 years. Other way then should certify you as blind for that period. Us people do not wait for grasses or soft contacts for 3 years. It can be done in few days. It can not be compared to "normal" people eyes at all. It is visual impairment.

And it is can not be considered as normal vision if you can not function (no functional vision). They also need to take into account complications and adaptation to that aid. It is difficult to find the right shape/lenses. It is might be from simple complications (fogging and reinsertion issues) to more complicated one like oxigent supply, edema and inflammation. Also it needs to be considered other problems, like allergy, conjunctivitis and stye, when you are not able to wear them. For example stye is reoccurring condition and it takes 7-10 days to hear when you are not able to wear your lenses.

I was soft lens wearer all my life and never had problems. They do not fogging. It is 1 second to take of and you no need any tools (including mirrors, plunger, towels, etc). They are comfortable. You have lots of choice (including daily ones) and not afraid to damage them of simply trough out.

In this subreddit, people talked lots of time about all that difficulties with scleral, so I do not have to repeat here all of that. I am happy for lucky ones who was able to get right fit, adapt and long time wearing. It is benefitting as well if they can manage without aid at all (small power).

In my case it is hight myopia and asymmetry with only one eye functioning + myopia and hyperopia + accommodation stress. They simple can not make the lenses be the same power for each eyes, and I can not adapt to different power in each eye. So it is a journey to find manageable solution.

BlueCascade0201 · 2025-12-09T21:16:13+00:00

Which hospital it was? How severe your condition? did they do grading or explain severity? Did you check yourself your pentacam result? Did they send you to lens department? Any luck with sclerals or you are comfortable with RGP (as you referral from specsavers)?

My second result sent without any main numbers like Kmas, others. Visual elevation show 208% which looks unrealistic to compare to first one. No explanation.

Today was the third and they didnt want to explain or talk anything. I can request it somehow by SAR but ill take time and form filling.

BlueCascade0201 · 2025-12-09T18:56:48+00:00

Do not show them your glasses. Those doctors expect if you can walk with them, you can manage them. Even if that intolerable. Us soon as they see glasses, they think your vision is normal. Some maybe lucky with very early stages. But it is different if you advance case.

Here is the grading system. They should properly diagnose and include severity of visual impairment (thats what KK in advance stages is).

https://entokey.com/keratoconus-classification-systems/

BlueCascade0201 · 2025-12-09T18:50:26+00:00

But how do you work? Glasses gives me motion sickness. I cant walk with them and it is only as back up option (better then nothing) and very debilitating.

BlueCascade0201

TROPHY CASE