Keratoconus Self-Help and Support Association

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Keratoconus Self-Help and Support Association

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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.

21/10/2026

Living with keratoconus is about more than what you can see on an eye chart👀

For many people, contact lenses make an enormous difference to their vision and independence – but they can also become a big part of everyday life. Remembering cases and solutions, planning ahead when going out, and making sure you’re never caught without what you need can become second nature.

This quote from one of our member stories captures that reality perfectly.

We’d love to hear from you: what’s one thing you always have to remember before leaving the house because of your keratoconus? 💬

Read more experiences from people living with KC on our website.

14/10/2026

💙 We’re delighted to welcome Jennifer G. Smith as a new Ambassador for the Keratoconus Group!

Jennifer is a UK author and speaker who lives with keratoconus and sight loss. Her memoir, Lost My Sight, Found My Freedom, explores sight loss, identity and rebuilding a life when the future you expected suddenly changes.

Through her writing and speaking, Jennifer talks openly about disability, the assumptions people make, uncertainty and adapting to life-changing circumstances – experiences we know will resonate with many within the keratoconus community.

We’re really pleased to have Jennifer joining us as an Ambassador and helping us raise awareness of keratoconus and the realities of living with sight loss.

And this is just the beginning… 👀 Keep your eyes peeled for more from Jennifer and the Keratoconus Group over the coming months!

Find out more about Jennifer and her work on www.jennifergsmith.com

09/10/2026

👁️ So, what does cross-linking actually mean for someone with keratoconus?

CXL is generally considered when there is evidence that keratoconus is progressing. Because its main purpose is to stabilise the cornea, identifying progression early can be important – particularly in younger people, where keratoconus may progress more quickly.

During the procedure, riboflavin (vitamin B2) eye drops and ultraviolet A (UVA) light are used to strengthen the bonds within the corneal tissue.

CXL doesn’t necessarily mean saying goodbye to glasses or contact lenses. Many people will still need vision correction afterwards, and prescriptions or lens fittings may need to be reviewed as the cornea settles.

If you’ve recently been diagnosed, regular monitoring allows your eye care team to look for changes in the shape of your cornea and discuss whether CXL may be appropriate for you.

💙 Have you had cross-linking? What do you wish you’d known beforehand?

06/10/2026

A great afternoon at our London Speaker Meeting this weekend! 💙

We were delighted to welcome Dan Ehrlich, former Head of Optometry at Moorfields, who shared the results of his recent research into specialist contact lenses for people with keratoconus.

The conversation didn’t stop with the research already completed. Dan invited the audience to share their thoughts on what should be explored next, including the questions they would most like future contact lens research to answer.

It was fantastic to see people with lived experience contributing their ideas and helping to shape the conversation around future research. 👁️

A huge thank you to Dan for joining us, and to everyone who came along, asked questions and shared their experiences.

02/10/2026

The stage is set for our meeting tomorrow. Looking forward to listening to Dan Ehrlich present the results of research into improving the design and availability of specialist contact lenses.

30/09/2026

🏃‍♂️🏃‍♀️ Our fantastic fundraisers are getting ready to go the extra mile for the Keratoconus Group! 💙

On 4th October, Johnny Sloss will be taking on the AJ Bell Great Scottish Run. Johnny was diagnosed with keratoconus at just 12 years old and underwent cross-linking shortly afterwards. Now, he’s taking on this challenge to raise money and help support others affected by KC.

Then on 18th October, Carolyn Southall will be taking on the AJ Bell Great South Run, her son recently underwent cross-linking surgery and she has received invaluable support and advice from our various members.

We’re incredibly grateful to Johnny and Carolyn for choosing to support us. Every donation, no matter the amount, helps us continue providing information, support and a community for people affected by keratoconus.

Can you help us cheer them on? 🙌

Visit our website to read more about our runners and find the links to their fundraising pages.

Good luck Johnny and Carolyn – the KC community is behind you! 💙

16/09/2026

Could inflammatory skin conditions be linked to an increased risk of keratoconus? 👁️

An interesting recent study has explored the relationship between keratoconus and several inflammatory skin conditions, including atopic dermatitis, psoriasis, seborrheic dermatitis and contact dermatitis.

Researchers found an increased five-year risk of developing keratoconus among people with several of the conditions studied, with the strongest association seen in those with atopic dermatitis.

The findings raise interesting questions about the possible role of inflammation in keratoconus and highlight the potential importance of greater awareness and earlier detection among people who may be at increased risk.

As the researchers point out, more research is needed to fully understand these relationships – but it’s an interesting development for the KC community.

Read the full article on the Keratoconus GB blog to learn more:
https://keratoconusgb.com/2026/07/10/several-inflammatory-skin-diseases-associated-with-increased-risk-of-keratoconus/

02/09/2026

📅 Join us for our Autumn Speaker Meeting!

We’re delighted to welcome Dan Ehrlich, former Head of Optometry at Moorfields, as our guest speaker on Saturday 3rd October at 11am.

Dan will be sharing the results of his continuing work to improve the design and availability of specialist contact lenses. The project began back in 2020, using advanced imaging technology and clinical data to explore better ways of fitting contact lenses for people with keratoconus.

Some of you may remember hearing an update on this fascinating work from Emma McVeigh at our 2023 AGM. Now, Dan will be presenting the latest results and developments.

Please note: this talk will not be recorded, so if you want to hear the latest findings, you’ll need to join us in person!

📍 Moorfields Education Hub
1st Floor, 15 Ebenezer Street, London, N1 7NP

Everyone is welcome, including people living with keratoconus, family members and supporters. There’ll also be a buffet lunch and plenty of opportunity to meet and chat with others in the KC community.

To help us cater for numbers, please let Anne know if you’re coming:
📧 [email protected]
📞 020 8993 4759

We hope to see you there! 💙

27/08/2026

Our Autumn Newsletter is here! 🍂💙

The latest edition of the Keratoconus Group newsletter is now on its way to our members by post or email, packed with news, research and updates from across our community.

In this issue:

👁️ Dr Waheeda Illahi explores keratoconus and other health conditions, including mental health, eye rubbing, cross-linking and contact lenses

📅 Details of our upcoming London Speaker Meeting and Zoom sessions

🏃 We celebrate Tosin Adebanjo’s fantastic London Marathon achievement and look ahead to our upcoming AJ Bell charity runners

🔬 An update on an exciting new eye imaging dataset that could help accelerate keratoconus research

💙 News from our recent Sight Village attendance and West Midlands Meet-Up

Plus, we say thank you to our retiring Chairman, Steve Graham, and share more ways to connect with and support the KC community.

Keep an eye on your letterbox or inbox for your copy!

Not a member yet? Find out more about the Keratoconus Group and how to join through our website.

19/08/2026

👁️ It’s Contact Lens Health Week!

For many people living with keratoconus, contact lenses are an essential part of everyday life – which makes looking after your lenses and your eyes especially important.

We’ve put together 5 simple reminders for healthy contact lens wear. 👆

And remember, different types of specialist lenses can have different care requirements, so always follow the cleaning, wearing and replacement advice given by your contact lens practitioner.

What’s your number one tip for looking after your lenses? Share it with the KC community below! 💙

Address

London

Telephone

+442089934759

Website

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

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