Keratoconus Self-Help and Support Association

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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.

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/

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

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/

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.

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.

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

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 💙

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!

22/04/2026

🏃🏾‍♂️✨ The London Marathon is here this weekend!

We’re incredibly proud to be cheering on Tosin, who’s not only running to raise funds for Keratoconus Group - but also attempting a Guinness World Record 👏🏾

His challenge? Completing the entire marathon in full African attire in under 4 hours 30 minutes. An amazing feat for an even more important cause.

If you’d like to come along and show your support, we’d love to see you there:
📍 Meet us at Temple Tube Station
🕛 Sun 26th Apr at 12:30pm

Let’s bring the energy and cheer Tosin all the way to the finish line! 💙

21/04/2026

We’re excited to share that Keratoconus Group will be attending Sight Village on 7–8th July!

Sight Village is a leading event that brings together:
🔹 Technology providers showcasing the latest assistive tech – from screen readers to magnifiers and braille
🔹 Charities and support organisations offering advice, services and community connections
🔹 Employers and educators sharing opportunities for accessible work and study
🔹 Visitors – including blind and partially sighted people and their families – exploring products and support

With a long and proud history, Sight Village continues to connect innovation, expertise and lived experience – helping people access the tools and opportunities they need for independence and inclusion.

👉 If you’re attending, come and say hello – we’d love to meet you!

Address

London

Telephone

+442089934759

Website

https://www.keratoconus-group.org.uk/

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