Keratoconus GB

Keratoconus GB Keratoconus GB has been set up for the public to help each other share their experiences about treatments and stories regarding KC. Think before you post.

Keratoconus support page for people living with all stages of the eye disease keratoconus, to share stories, help each other with advice, and have a chat with people that really understand what living with KC is like Keratoconus GB is a great place to meet new people in the UK & globally who also live with KC on a day to day basis. OFFICIAL KCGB GUIDELINES

We have never been ones for rules but as

KCGB has expanded we have had several incidents brought to our attention, and as the grows we need to lay out some guidelines for members. We want everyone to enjoy their experience here and we want to hear from you and encourage comments, questions, and suggestions. We ask that you simply stay on topic, respect other people’s opinions, avoid profanity, offensive statements, illegal content, and anything else that might otherwise upset our members.

• While debating and healthy discussions are fine, the admin will not tolerate rudeness, Offensive or violent language, insulting and defamatory posts, Hateful or discriminatory comments regarding race, ethnicity, religion, gender, disability, sexual orientation or political beliefs, personal attacks or purposeless inflammatory comments. Everyone is entitled to their opinion, which is why KCGB is here.

• Please do not offer medical advice unless qualified to do so

• We will also not tolerate abusive behaviour via PM to any member from another member and will take behaviour like this very seriously should it be brought to our attention. Attacks on specific groups or any comments meant to harass, threaten or abuse an individual will be deleted and the member banned.

• Spamming is strictly not allowed. Facebook has spam filters for multiple identical posts. You will be deleted and banned. Links or comments containing sexually explicit content material will be deleted. Violations of copyright or intellectual property rights will be deleted. Spam, link baiting or files containing viruses that could damage the operation of other people’s computers or mobile devices will be deleted’

• You are solely responsible for your own prestige and reputation. Think before you reply. Your words determine who you are. Be nice.

• Kindly observe ethical behaviour when posting. Any post that would put the reputation of KCGB at risk will be deleted. The deletion will serve as a warning and violators will be banned the next time.

• Discussions of political nature, political groups, and political activities, religion and religious beliefs that may offend or upset members are not permitted. Let’s keep to the subject matter- keratoconus.

• We ask you to refrain from annoying behaviours such as flaming & trolling & sock puppeting. When you go out of your way to be annoying, you can expect to be warned or banned.

• The admin and all future admins reserve the right to remove a post and to ban anyone who wilfully violates KCGB rules and reserves the right to update and modify these rules as the needs of KCGB dictate so as to ensure friendly group conversation, willingness to learn and help others, and mutual trust and understanding

Thank you- your cooperation is appreciated

Stephen Portlock is delighted to bring to the Brighton FringeStephen and Hamlet: Blind and MadThe Caroline of Brunswick,...
25/04/2026

Stephen Portlock is delighted to bring to the Brighton Fringe
Stephen and Hamlet: Blind and Mad
The Caroline of Brunswick, 39 Ditchling Road, Brighton BN1 4SB.

1st May 10:45pm

12th May 8:15pm

Tickets: Pay what you want with a suggestion of £5.
https://www.brightonfringe.org/events/stephen-and-hamlet-blind-and-mad/
When you’re a middle-aged, blind obsessive compulsive, life can be very odd, very confusing and very rude. A blind madman wonders how we can all just be nicer to one another.
“Witty… bawdy… has the audience in stitches” (Camden New Journal)

“Excellent” (Ultimate Radio)

“Wonderful… with the best closing line of the night” (Kyle Wallace, magician, comedian and host of G&B Comedy)

Semi-finalist Max Turner Prize comedy competition 2022
Age suitability: 18+
www.stephenportlockcomedy.com
Stephen is an accomplished print journalist, having written for broadsheets, lifestyle magazines and the disability press. He has appeared on TV, in a pop video and played the lead role in a short film drama Blank Canvas.
A profile feature from Fiona Musgrove of Eye Matter can be found at:
http://www.stephenportlockcomedy.com/about/

09/04/2026

Meet Tosin 👋🏾

Later this month, he’s taking on the London Marathon not just as a personal challenge - but to make a difference for our community. 💙

And he’s not stopping there… Tosin is also attempting a Guinness World Records by running the entire marathon in full African attire - all in under 4 hours 30 minutes. 🏃🏾‍♂️🔥

We’d love your support:
👉 Donate here: https://2026tcslondonmarathon.enthuse.com/pf/tosin-adebanjo
👉 Follow Tosin’s journey and cheer him on every step of the way

Let’s get behind him and make this incredible effort count 🙌🏾 Link in bio

Meet Tosin 👋🏾Later this month, he’s taking on the London Marathon not just as a personal challenge - but to make a diffe...
09/04/2026

Meet Tosin 👋🏾

Later this month, he’s taking on the London Marathon not just as a personal challenge - but to make a difference for our community. 💙

And he’s not stopping there… Tosin is also attempting a Guinness World Records by running the entire marathon in full African attire - all in under 4 hours 30 minutes. 🏃🏾‍♂️🔥

We’d love your support:
👉 Donate here: https://2026tcslondonmarathon.enthuse.com/pf/tosin-adebanjo
👉 Follow Tosin’s journey and cheer him on every step of the way (on insta)

Let’s get behind him and make this incredible effort count 🙌🏾

New blog post! Read about Stephen and his Kc Journey
30/03/2026

New blog post!
Read about Stephen and his Kc Journey

Ste[hen P 80 years young, shares his Keratoconus story with us, in the hope of inspiring others, and getting across the message that having KC is not the end of the world, albeit a challenge. & #822…

PLEASE SPONSOR TOSIN! https://2026tcslondonmarathon.enthuse.com/pf/tosin-adebanjoThank you for supporting me and the Ker...
28/03/2026

PLEASE SPONSOR TOSIN!
https://2026tcslondonmarathon.enthuse.com/pf/tosin-adebanjo

Thank you for supporting me and the Keratoconus Group.
I’m running the 2026 for the Keratoconus Self-Help and Support Association because keratoconus has been part of my life for the past 15 years.
Living with has brought daily challenges — from changes in vision and ongoing treatment, to the emotional impact of adapting to a condition that affects something as fundamental as sight. Over the years, I’ve learned resilience, patience, and the importance of support, both medical and personal.
The Keratoconus Group plays a vital role in raising awareness, providing information, and supporting people who are living with this condition. By running the London Marathon, I want to give something back and help ensure that others affected by keratoconus feel informed, supported, and less alone on their journey.
Taking on this marathon is a huge personal challenge for me, but it’s one I’m proud to face — not just for myself, but for everyone living with keratoconus.
Thank you for supporting me and the Keratoconus Group.

28/03/2026

We know how important it is to see someone who truly understands keratoconus. That’s why we’ve created a UK-wide KC Friendly Optometrist Map - so you can find trusted professionals near you.

You can also find local hospitals that have KC fitting facilities.

Visit our website to explore the map and find the right support for your eyes 💙

https://keratoconus-group.org.uk/Living-with-keratoconus/uk-keratoconus-optometrists/

26/03/2026

Today we handed in our Out of Sight petition, calling for blind and partially sighted people get the vision rehabilitation support they need, when they need it, to the Department of Health and Social Care.

An incredible 48,484 of you signed it – thank you so much.

We set off from Parliament Square on a cane walk to the hand-in, showing the vital mobility skills blind and partially sighted people develop, alongside many others, through vision rehabilitation.

Health Secretary Wes Streeting can’t now be in any doubt about public support for action to ensure effective vision rehabilitation services in England.

Watch this space for updates on the next stages of our campaign.

[Image description: Cane users Geoff Smith, Charmaine Ashpole, Rob Sears, Frankie Brady, Claire Sisk, Mike Wordingham and Tom Skelton standing in front of the Department of Health and Social Care building holding up large pieces of paper with 48, 4, 8 and 4 on them.]

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London

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