Blog Posts

The Sight Advice FAQ

The Sight Advice FAQ answers questions about living with sight loss, eye health or being newly diagnosed with a sight condition. This includes those who are supporting people through their sight loss journey, including parents, partners, carers and friends.
It contains a search box and menu to find what you’re looking for.The site has been built by RNIB, Guide Dogs, Visionary, VICTA and Fight for Sight, working together in partnership.  Click here to visit the site

Their most frequently asked questions

London Speaker Meeting

Our next London Speaker Meeting will take place on on Saturday 21st September, 2019 at 11:00am in the lecture theatre of the Moorfields Clinical Tutorial Unit which is now located at 15 Ebenezer Street, N1 7NP (go up Provost Street which is across the road from the main hospital and you’ll find 15 Ebenezer Street on the next corner).

Our guest speaker is Dr Vijay Anand PhD BSc (Hons) MCOptom DipTp(Ip), Deputy Head of Optometry at Moorfields Eye Hospital.

The title of the talk will be:

Visual Correction for Keratoconus

This will cover:

Spectacles
Soft contact lenses
Corneal cross linking
Corneal rings
Medical contact lenses (RGP, Hybrid, Scleral)
Post graft corrections

This talk will have practical implications for all of us affected by the condition.  It will be followed by our usual Q & A.  This is a unique opportunity to ask and listen to questions relating to practical issues encountered by fellow members.

There will be a finger buffet, free of charge, where you can continue exchanging your Keratoconus experiences.

Cornea Donation Shortfall Highlighted

Fight for Sight is working to raise awareness of the importance of eye donations after research has found that eyes are the organ that people would be the least likely to donate following their death.
The eye research charity has highlighted that there is currently a shortfall in corneas that can be used for transplant, with statistics released by NHS Blood and Transplant this month reporting that there are currently 279 corneas in eye banks, despite the target being to have around 350 at all times.

Continue Reading on Optometry Today website

AGM Report

Our well attended, AGM was held on 23rd March 2019.

Three new committee members were appointed namely, Batcho Notay, Caroline Condillac and Jacqui Thomas.  Moira O’Brien resigned for health reasons.  The meeting paid tribute to Moira who has been a supporter of the KC group since its inception.  Click here to see a full list of officials.

The Chairmans report is available here

The meeting was followed by a fascinating talk by Alison Hardcastle, Professor of Molecular Genetics at the Institute of Ophthalmology Faculty of Brain Sciences, who spoke about the Moorfields genetic study.

To read the research summary published by UCL INSTITUTE OF OPHTHALMOLOGY- click here

Brighton Branch Meeting

We had an encouraging start with our inaugural meeting on 9th March.

Mr Mayank Nanavaty spent an hour talking through the different scenarios facing a typical (if there is such thing) Keratoconus patient. Outlining the various treatment options. He also updated us on the latest Laser equipment and surgical developments.  He made sure everyone had the opportunity to ask questions and answered them fully.

A further meeting will be held on 9th November 2019.

 

Next West Midlands Branch Meeting

The next West Midlands branch meeting of the Keratoconus Group will be held on Saturday 10th August 2019 at 11am.

The venue is the John Lewis Birmingham Community Hub GRAND CENTRAL above New Street Station. Go to the 4th floor, turn right at the top of the escalator, in the corner on left by Audio & TV.


The speaker will be

Professor Martin Rubinstein

talking about Contact Lenses

Those of you at last year’s conference may remember that Professor Rubinstein was in the audience with two of the Conference speakers paying tribute to him; so this should be a very good talk.

All welcome, whatever your history of KC.

FOR FURTHER DETAILS Please ring John Thatcher: 01743 625138.

New members are welcome. Hope to see you there. Feel free to drag and zoom the map below.

View Larger Map

Other Dates for 2019:

12th October – Where  Ash Winter will give his personal account as someone affected by KC who self-published a short book about his story.

Gallery

          

2018 Conference Videos

The videos taken at the 2018 KC Group Conference held in Birmingham in September are now online and ready to view.

They can all be viewed on the video page in postage stamp format, and you can click the icon on the bottom right of each video to make it full screen for easier viewing.

The videos are also available on our YouTube channel.

Take me to the videos

How many people have keratoconus?

This is an interesting article published by the National Keratoconus Foundation in America:

For many years, it’s been long stated that keratoconus occurs in one person in every 2,000. In an article published in March 2017, the American Journal of Ophthalmology, Dr. Daniel Godefrooij, from the University of Utrecht, refines our understanding of incidence and prevalence of KC(2).


The analysis that KC occurs in 1 in every 2,000 people was derived from a patient registry that was initiated in part by NKCF, over the span of fifty years from the 1930s to the 1980s. Some early supporters of NKCF likely participated in the voluntary survey.  Read More…

Moorfields Eye to Eye Walk

We had another great 14 mile walk through London.  Not as green as last year but architectural interesting and physically challenging, walking to Islington, Camden, then looping past Hampstead Heath, up to  Belzise Park and Primrose Hill.  The second half took us around regents Park then through Hyde Park and St Jameses Park.  We finished with refreshments in the old County Hall building.

Here we are at the end:
Laura D’Silva, Nawaz Rahman, Susie Nyman and David Gable

Here is our report from  March 2018.

Eight of us formed the KC team among the 500 walkers.  We gathered in front of the piano in Moorfields reception for this photo ready for our 14 mile track.

After two of the coldest days in decades, the sun came out to send us on our way.  It was a bright crisp morning with plenty of ice still floating on the canal.

The route was perfect, we all found parts of London we had never seen before.  It traced the Regents Canal, with a few detours through places of interest, to Little Venice.  Then turned south to Paddington for our half way stop.  The second section took us through the royal parks and theatre land.

The temperature was ideal for walking, as was the company.  We were so busy chatting that the miles flew by and after 5 hours we had completed our task and settled down to coffee, cake and a steel band.

This is an annual event and I thoroughly recommend it for next year.   We raised well in excess of £1,000 and are overwhelmed by the generosity of friends and family. 

One hiccup, we were so busy talking about the Royal Opera House that we missed the 1/2 mile loop around Lincolns Inn, but don’t tell anyone.

 

 

Fight for Sight / Keratoconus Group Small Grant Award

We are pleased to announce that we have entered in to an agreement with Fight for Sight to support an award up to the value of £15,000 to fund research into the condition Keratoconus.

The Award will be funded as to 50% by Keratoconus Group and 50% by Fight for Sight.

Latest Update

We can now announce that the funding has been awarded to a team led by Dr Mouhamed Al-Aqaba at Nottingham University .  The project is titled – “The involvement of corneal nerves in the pathogenesis and progression of keratoconus”.  The research team has already identified that corneal nerves are dramatically altered in KC and will now be looking at whether these changes have a relation to the severity and progression of KC and identifying the types of nerves involved. This promises to increase the understanding of the condition, and may eventually lead to new interventions.

This is an exciting adventure made possible by the generous sponsorship of Barbican Insurance.