Keratoconus Self-Help and Support Association

Keratoconus Self-Help and Support Association We are a UK based charity run by a committee all of whom have a passion for helping those with this condition.

We have a Website, Forum, newsletters and Conferences.

📢 **Zoom Meeting Postponed**Due to circumstances beyond our control, our Zoom meeting scheduled for next week has been p...
17/06/2026

📢 **Zoom Meeting Postponed**

Due to circumstances beyond our control, our Zoom meeting scheduled for next week has been postponed.

We apologise for any inconvenience and appreciate your understanding. A new date will be announced as soon as possible.

If you're interested in attending, please email [email protected] and you'll be among the first to hear when the new date is confirmed.

Thank you for your continued support, and we look forward to seeing you online soon.

10/06/2026

What can keratoconus patients tell us about improving hospital care? 👁️

At our AGM, Dr Waheeda Illahi shared findings from a highly important survey carried out by the BMEC optometry team involving 500 keratoconus patients. The research highlights patient experiences and could help drive significant improvements in keratoconus hospital care.

Watch her talk “Keratoconus and Other Health Conditions: Any Cause for Concern?” in full now: https://youtu.be/Cf4G24ecztk?si=W-CToZuUBPWUzgLd

CXL (Corneal Collagen Cross-Linking) is one of the most talked-about treatments for keratoconus - but what actually is i...
03/06/2026

CXL (Corneal Collagen Cross-Linking) is one of the most talked-about treatments for keratoconus - but what actually is it, who is it for, and what should you know before considering it?

Our friends at GB have a great blog that breaks down:
👁️ What CXL involves
👁️ The difference between epi-on & epi-off
👁️ Risks, recovery & expectations
👁️ NHS availability in the UK
👁️ Why CXL is designed to slow progression - not “cure” keratoconus

If you or someone you know has recently been diagnosed with KC, this is essential reading. 💙

Read the full article here: https://keratoconusgb.com/what-is-cxl-or-collagen-cross-linking-for-keratoconus/

Every keratoconus journey is unique - and your story could make a real difference to someone else navigating theirs. 💙Wh...
27/05/2026

Every keratoconus journey is unique - and your story could make a real difference to someone else navigating theirs. 💙

Whether you want to share your diagnosis journey, lens experiences, surgery story, challenges, or words of encouragement, we’d love to hear from you.

By sharing your experience, you could help raise awareness, provide comfort, and remind others in the KC community that they’re not alone. 👁️

If you’d like to be featured in our Member Stories blog or social media channels, submit your story here: https://forms.gle/NhUS5Jdvn6mL2Kvu9

Living with keratoconus can feel overwhelming at times, which is why sharing real experiences from our community matters...
20/05/2026

Living with keratoconus can feel overwhelming at times, which is why sharing real experiences from our community matters so much. 💙

From diagnosis and contact lenses to transplants and everything in between, our member stories remind us that no two KC journeys are the same - and that support and perseverance can make a huge difference.

Read more stories from people living with keratoconus on our website and hear directly from those who truly understand. 👇

https://keratoconus-group.org.uk/Living-with-keratoconus/member-stories/

While eye rubbing has been linked to the progression of keratoconus, it’s important to remember that KC is a complex con...
13/05/2026

While eye rubbing has been linked to the progression of keratoconus, it’s important to remember that KC is a complex condition with multiple contributing factors - including genetics and underlying eye conditions.

Rubbing your eyes occasionally doesn’t mean you will develop keratoconus. 💙

For those living with KC, reducing eye rubbing where possible may help protect the cornea over time. Things like cold compresses, lubricating eye drops, managing allergies, and gently pressing around the eye area instead of rubbing directly can sometimes help ease irritation.

If itching or discomfort is persistent, it’s always best to speak with your eye care professional for advice and support.

Last week, we had the privilege of attending an incredible three-day programme at Hertford Optometry dedicated to specia...
08/05/2026

Last week, we had the privilege of attending an incredible three-day programme at Hertford Optometry dedicated to specialised contact lens practice, keratoconus management, and ocular surface disorders.

From advanced RGP fitting principles and scleral lens design to hands-on practical sessions and real-world case studies, the event brought together expertise, innovation, and collaboration across the field.

It’s inspiring to see continued education and clinical excellence driving better outcomes for people living with keratoconus. Thank you to everyone involved for sharing knowledge, experience, and passion throughout the programme.

🏁 What a day at the London Marathon!A huge congratulations to Tosin, who took on an incredible challenge - running the e...
30/04/2026

🏁 What a day at the London Marathon!

A huge congratulations to Tosin, who took on an incredible challenge - running the entire marathon in full African attire while raising funds for Keratoconus Group 🙌🏾

He narrowly missed his Guinness World Record target by just 10 minutes… but still achieved something amazing by being part of a record-breaking day with the highest number of finishers alongside thousands of other runners 🎉

We’re so proud of his determination, resilience, and commitment to the cause 💙

Thank you to everyone who came out to support, cheer, and donate - you made a real difference. Your energy meant everything!

If you’d still like to continue to support Tosin’s fundraising efforts, you can still donate here: https://2026tcslondonmarathon.enthuse.com/pf/tosin-adebanjo

Being diagnosed with Keratoconus can bring up a lot of questions - and for many people, driving is one of the first worr...
28/04/2026

Being diagnosed with Keratoconus can bring up a lot of questions - and for many people, driving is one of the first worries.

The truth is, many people with keratoconus continue to drive safely with the right vision correction and support. But it is your responsibility to make sure your vision meets legal driving standards and to keep the DVLA informed if required.

If your vision feels unstable right now, it doesn’t mean it will stay that way.

Take it step by step. You’re not alone in this 💙

Join us for our next informal Zoom drop-in, next week, on Thursday 30th April at 7:00pm.Whether you’re newly diagnosed, ...
23/04/2026

Join us for our next informal Zoom drop-in, next week, on Thursday 30th April at 7:00pm.

Whether you’re newly diagnosed, managing keratoconus, or just want to connect with others who understand, this is a relaxed space to ask questions, share experiences, or simply listen.

Everyone is welcome 💙

📅 30th Apr | ⏰ 7:00pm | 💻 Zoom

Email [email protected] to receive the link!

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