Living with Keratoconus: Real-Life Tips to Protect Your Vision

Keratoconus is a progressive eye condition that often goes undiagnosed for years — sometimes well into a patient’s twenties or thirties — leading to considerable frustration, vision loss, and emotional distress. It affects approximately 1 in 375 people in the UK, though many cases are believed to go unrecognised in the early stages. Globally, its prevalence is increasing, possibly due to better diagnostic tools and a greater understanding of early symptoms.

The condition causes the cornea — the transparent front part of the eye — to thin and bulge into a cone-like shape. This structural change alters the way light enters the eye, distorting vision in complex ways that cannot be fully corrected with glasses.

Keratoconus is not rare, but it is often misunderstood or misdiagnosed, especially in its early phases. Patients may struggle for years with frequently changing prescriptions, increasing astigmatism, and visual disturbances that seem to defy conventional correction. By the time a proper diagnosis is made, many patients are already dealing with a sense of fatigue and frustration from the journey itself.

This guide provides not only clinical and lifestyle tips but also recognises the psychological burden of living with a fluctuating, progressive condition — one that affects your independence, your confidence, and your emotional wellbeing.

Understanding Keratoconus

While it was one considered that keratoconus typically begins during late adolescence or early adulthood, clinicians are now seeing an increased number of cases in children, including those under the age of 10. Easy-onset keratoconus may progress more rapidly to reach advanced stages without early intervention. It often progresses for 10–20 years before stabilising, although the rate of progression can vary between individuals — and even between eyes.

Some key facts:

• It can affect both eyes, though asymmetrically
• The disease tends to progress faster in younger individuals
• Vision changes may initially be subtle and misattributed to refractive error
• Frequent prescription changes, ghosting, glare, halos, and night driving difficulty are common early signs
• A family history, chronic eye rubbing, and allergic eye disease are risk factors

Globally, the prevalence of keratoconus varies by region and ethnicity. Studies estimate it affects:

• Approximately 1 in 375 people in UK
• Up to 1 in 84 individuals in parts of Middle East, such as Saudi Arabia
• Individuals of South Asian, Middle Eastern, and North African descent are more likely to develop keratoconus compared to those of European descent

Several factors are thought to contribute to this disparity, including genetic predispositions, eye rubbing habits, allergic eye disease, and higher UV exposure. Despite advances in diagnostic imaging, the condition is still frequently misdiagnosed in early stages, often mistaken for high or irregular astigmatism.

Because keratoconus often gets diagnosed late until their vision deteriorates enough that standard glasses or contact lenses are no longer effective — patients may feel they’ve missed the opportunity for early intervention. Many reflect that their vision concerns were not fully understood by others, even by health professionals. This experience can lead to self-doubt, emotional stress, and a sense of isolation.

Recognising keratoconus early- especially in children and adolescents – is crucial. Early diagnosis allows for timely intervention with treatments like corneal cross-linking, which can slow down or halt the progression and preserve vision.

The Emotional and Psychological Impact

Living with keratoconus is not just about managing vision — it’s about coping with uncertainty.

Patients often experience:

• Anxiety about progression and the future
• Fatigue from repeated scans, refits, and clinical appointments
• Worry about career choices, driving, or independence
• Stress around making the “right” treatment decision
• A feeling of being misunderstood, especially when others can’t “see” the disability

This emotional burden can become just as difficult as the visual symptoms. It’s important to acknowledge this side of the condition — and to take active steps to protect your mental wellbeing.

Coping tips:

• Keep a written log of your vision experience to help communicate with clinicians
• Ask for detailed explanations and time when discussing treatment options
• Join patient support groups — many find comfort in hearing others’ experiences
• Seek professional mental health support if anxiety or low mood persists
• Talk openly with family or friends — even if they can’t relate, they can support you

Day-to-Day Vision Management

1. Stay on Top of Monitoring

Corneal topography and tomography are key tools for monitoring changes in your corneal shape. These are typically done every 6–12 months, depending on progression.

• Request copies of your scans so you can follow your progression
• Ask your optometrist or surgeon to explain changes using visuals
• Early detection of progression allows timely intervention with corneal cross-linking

2. Corneal Cross-Linking (CXL)

Corneal cross-linking (CXL) uses riboflavin drops and UV light to strengthen corneal collagen fibres and slow or stop progression.

• Most effective when done early — ideally before corneal scarring or extreme steepening
• Often still beneficial in patients over 30 if scans show change
• Can reduce the risk of needing future corneal transplantation
• Usually performed as a day procedure under topical anaesthesia.

3. Find the Right Lenses for You

Most keratoconus patients will eventually need specialist contact lenses to see clearly. These include:

• RGP lenses – rigid lenses that provide a smooth optical surface
• Hybrid lenses – hard centre with a soft edge for comfort
• Scleral lenses – large lenses that vault over the cornea, resting on the white of the eye (sclera), creating a fluid reservoir

Tips:

• Be patient during the fitting process — it may take multiple tries
• Keep backup lenses and a small mirror with you when out
• Carry preservative-free lubricating drops for use throughout the day

4. Lens Hygiene and Daily Care

Maintaining your lenses is vital for comfort and eye safety:

• Never rinse with tap water — use saline or the solution prescribed
• Clean your lenses immediately after removing them
• Replace your storage case every 1–3 months
• Use a fresh batch of solution daily
• If your lenses fog or shift, check for bubbles or dryness and reinsert if needed

Lifestyle Adaptations

Digital Screens

Screen fatigue is common. Tips include:

• Use large fonts and bold text
• Apply matte screen protectors or anti-glare coatings
• Adjust screen brightness and contrast
• Use the 20-20-20 rule (every 20 mins, look 20 feet away for 20 seconds)
• Blink frequently — especially when concentrating

Nutrition and Hydration

No diet cures keratoconus, but certain nutrients support corneal and tear film health:

• Vitamin C – oranges, bell peppers, broccoli
• Vitamin E – sunflower seeds, almonds
• Omega-3s – oily fish, flaxseed
• Zinc – chickpeas, red meat, shellfish

Drink at least 6–8 glasses of water a day, and limit alcohol and processed foods that can worsen inflammation.

Dry Eye and Allergy Management

• Use preservative-free artificial tears 3–6 times daily
• Avoid sitting directly in front of heaters or fans
• Use a humidifier in your workspace or bedroom
• Treat hay fever and allergy symptoms promptly with antihistamine drops
• Consider warm compresses and lid wipes to maintain lid hygiene

UV Protection

• Wear sunglasses that block 100% of UVA and UVB rays
• Wear a wide-brimmed hat on bright days
• Avoid sunbeds or UV-emitting beauty treatments around the eyes

Travel, Exercise, and Daily Life

Keratoconus should not stop you from enjoying life — it just requires some planning.

• Pack extra lenses and solution when travelling
• Bring a lens plunger and travel-size mirror in your hand luggage
• Do not swim with lenses — wear prescription goggles
• Use safety goggles or sports glasses for high-contact sports
• Let travel companions or employers know about your condition if you need flexibility

Making Treatment Decisions

Choosing between monitoring, cross-linking, KeraNatural, or transplant options can feel overwhelming. Ask your clinician:

• Is my keratoconus currently progressing?
• Am I eligible for cross-linking now?
• How stable is my vision with my current lenses?
• Would inlay technologies be beneficial for me?
• What is the long-term plan if my vision declines?

Don’t hesitate to ask for a second opinion — informed decisions are better than rushed ones.

Frequently Asked Questions (FAQs)

1. Can I still drive if I have keratoconus?
   Yes — many people with keratoconus are able to continue driving safely, particularly during the early or moderate stages. The key is ensuring your corrected vision meets DVLA legal standards, typically achieved through properly fitted contact lenses. However, night driving can be particularly challenging, due to symptoms like glare, halos, and reduced contrast sensitivity.
   Tips:
   • Ask your optometrist for anti-glare or night driving aids.
   • Avoid driving in low light or unfamiliar areas if vision feels unstable.
   • Schedule regular eye exams to ensure your lenses are still effective.
   • If you’re unsure about your visual safety on the road, consult your clinician before continuing to drive
     
2. Can I war makeup with keratoconus and contact lenses?
   Yes, but extra care is essential. Contact lenses — particularly scleral and hybrid lenses — can trap tiny makeup particles, which may cause irritation, lens clouding, or even infection if hygiene is poor.
   Makeup tips:
   • Insert your lenses before applying makeup
   • Remove contact lenses before removing the make-up so the lens isn’t exposed to rubbing, oils, or particles during cleansing
   • Use hypoallergenic, oil-free products
   • Avoid loose powders, glitters, or lash extensions
   • Do not apply eyeliner to the waterline — it can block oil glands and interfere with tear quality
   • Wash makeup brushes frequently
3. Can I sleep or nap in my lenses?
   Sleeping in contact lenses — even for short naps — is generally not recommended unless your specialist has prescribed lenses specifically approved for overnight use (which is uncommon in keratoconus). Sleeping in lenses reduces oxygen delivery to the cornea and increases the risk of infection, corneal swelling, and discomfort.
   If you’re tired or unwell:
   • Remove your lenses and switch to glasses
   • If you accidentally nap in them, remove them carefully and use lubricating drops
   • Avoid rubbing your eyes upon waking
4. Will I eventually need a corneal transplant?
   Only a minority of patients — around 10–20% — progress to a stage where corneal transplantation becomes necessary. This is usually due to:
   • Severe corneal scarring
   • Extreme thinning or steepening
   • Inability to achieve usable vision even with specialist lenses
     
     There are two main types of transplants:
   • DALK (Deep Anterior Lamellar Keratoplasty): preferred in keratoconus as it preserves the patient’s inner corneal layer
   • Extreme thinning or steepening
   • PK (Penetrating Keratoplasty): full-thickness transplant, used in some advanced or scarred cases
     Early diagnosis and timely cross-linking procedure can dramatically reduce the likelihood of needing surgery.
5. How often do I need to replace my contact lenses?
   This varies by lens type, wear time, and material, but general guidance is:
   • RGP lenses: every 12–18 months
   • Hybrid lenses: every 6–12 months
   • Scleral lenses: every 12–24 months
     
     Lenses may need to be replaced sooner if:
   • Your vision changes
   • Lenses become scratched, foggy, or uncomfortable
   • Deposits or protein buildup can’t be removed
   • Your corneal shape has altered, impacting fit
     Routine check-ups help determine whether your lenses are still safe and effective.
6. Is keratoconus inherited?
   Yes, keratoconus can have a genetic component. If you have a first-degree relative (parent, sibling, or child) with keratoconus, their risk may be higher. In some cases, the condition is linked to systemic diseases like Down syndrome or connective tissue disorders such as Ehlers-Danlos.
   Recommendations:
   • Encourage close family members to undergo corneal topography if they show any vision changes
   • Early detection allows for monitoring or cross-linking procedure to be performed to slow down the progression before significant vision loss occurs
     Genetic testing for keratoconus is not yet widely available or routine, but research is ongoing.
7. Will keratoconus eventually stabilise on its own?
   Yes — in most patients, keratoconus eventually stabilises. This usually occurs after the age of 35 to 40. However, progression during the earlier years can be rapid and unpredictable. That’s why timely diagnosis and management, including corneal cross-linking, is critical.
   Once stabilised, the condition may not worsen further, but the structural changes to the cornea remain. Some patients still need lenses or surgical options to correct residual distortion.
8. Can I go blind from keratoconus?
   Keratoconus does not cause total blindness, but it can lead to significant visual impairment if left untreated — particularly if scarring develops or the cornea thins to the point of rupture (hydrops).
   With proper management, including:
   • Early detection
   • Specialist lens fitting
   • Corneal Cross-linking (CXL)
   • Avoiding eye rubbing
     … most patients retain functional, long-term vision and avoid the need for transplant.
9. Can I work full-time or continue my studies?
   Absolutely. Many people with keratoconus lead full working lives across all industries — including those using screens, reading, or requiring visual precision. You may need reasonable adjustments, such as:
   • Larger monitors
   • Adjusted lighting
   • More frequent screen breaks
   • Supportive HR or occupational health involvement
     Let your employer or academic support team know about your condition. Most institutions are supportive when they understand the nature of keratoconus.
10. Is laser eye surgery (LASIK or PRK) an option for me?
    Standard laser eye surgeries like LASIK and PRK are typically contraindicated for patients with keratoconus. These procedures remove corneal tissue — which is already weakened in keratoconus — and may worsen the condition or cause complications.
    However, newer techniques and alternatives exist:
    • KeraNatural inlays: a natural corneal inlay used to improve shape and vision
    • Intracorneal ring segments (ICRs or INTACS): plastic implants to flatten the cornea
    • Phakic IOLs: implantable lenses placed inside the eye (not involving corneal tissue)
      Discuss these options with your specialist if you’re exploring alternatives to lenses.
11. Can I fly or travel with keratoconus?
    Yes. Flying and travelling are generally safe. However, dry cabin air, time zone changes, and unfamiliar conditions can affect your comfort.
    Tips:
    • Use lubricating drops during flights
    • Pack all lens supplies in your carry-on
    • Carry a backup pair of lenses or glasses
    • Avoid inserting lenses in public washrooms or planes
    • Ensure you have enough saline and cleaning solution for your trip
      If you’re travelling long-term or abroad, consider carrying a copy of your most recent prescription and scans.
12. What should I do if my lenses fog up or become uncomfortable?
    Fogging can result from:
    • Poor lens fit
    • Residual debris
    • Protein buildup
    • Incomplete saline fill (scleral lenses)
    • Dry eye or excessive mucus
      
      To manage it:
    • Remove, clean, and reinsert your lenses with fresh solution
    • Use extra preservative-free lubricating drops
    • Speak to your optometrist about anti-fog strategies or lens redesign
    • Ensure your cleaning solution is compatible with your lens material
      Persistent fogging is not normal — it warrants professional review.

Final Thoughts

Living with keratoconus doesn’t have to mean living in fear of your vision deteriorating. With the right knowledge, proactive care, and regular monitoring, you can take meaningful steps to protect your eyesight and maintain your quality of life. While keratoconus can present daily challenges, understanding your options—from custom lenses to surgical treatments—gives you the power to make informed choices tailored to your needs.

Early diagnosis and consistent follow-up with an experienced eye specialist are key. Treatments like corneal cross-linking, scleral lenses, or even corneal transplants are more effective when applied at the right stage. That’s why being aware of even subtle changes in your vision and acting on them promptly is so important. Don’t wait until things get worse—prevention and early intervention are your strongest allies.

Lifestyle adjustments, too, can play a role. Simple actions like avoiding eye rubbing, managing allergies, wearing UV protection, and staying on top of general health conditions like diabetes can all help reduce strain on your eyes. You may not be able to reverse keratoconus, but you can definitely slow its progression and preserve your functional vision for years to come.

If you’re experiencing symptoms of keratoconus—such as blurred or distorted vision, frequent prescription changes, or sensitivity to light—feel free to contact us at Eye Clinic London to consult with one of our expert consultant ophthalmologists. With the right support and clinical guidance, you can confidently manage keratoconus and continue enjoying life with clarity and peace of mind.

References

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2. Kymes, S.M., Walline, J.J., Zadnik, K. and Gordon, M.O., 2008. Quality of life in keratoconus. American Journal of Ophthalmology, 145(4), pp.611–617.e2. Available at: https://www.sciencedirect.com/science/article/abs/pii/S0002939407010679
3. Gomes, J.A.P., Tan, D., Rapuano, C.J., Belin, M.W., Ambrósio, R., Guell, J.L., Malecaze, F., Nishida, K. and Sangwan, V.S., 2015. Global consensus on keratoconus and ectatic diseases. Cornea, 34(4), pp.359–369. Available at: https://journals.lww.com/corneajrnl/Fulltext/2015/04000/Global_Consensus_on_Keratoconus_and_Ectatic.2.aspx
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5. Hashemi, H., Beiranvand, A., Yekta, A., Ostadimoghaddam, H. and Khabazkhoob, M., 2019. Prevalence of keratoconus in a population-based study in Iran. Cornea, 38(4), pp. 427–432. Available at: https://doi.org/10.1097/ICO.0000000000001875