Category: Uncategorized

Genetic study uncovers hidden pieces of the keratoconus puzzle

Many of our members have been following this study. It has been carried out University College London (UCL), Moorfields, Kings College London and other national and international collaborators and is aimed to investigate the key unsolved questions surrounding keratoconus. Indeed quite a few of our members took part in the genetic study and Stephen Tuft of UCL has thanked the KC Group for its support. You may remember Dr Alison Hardcastle gave an excellent presentation of their findings at our 2019 AGM as reported in our Summer newsletter that year.

The good news is that the latest results from this project have now been published and these are summarised in the the Moorfields Press Release –here

For those with a scientific bent, you can read the full 13 page technical paper – here

Sight and Sound Technology

We would like to thank Sight and Sound for hosting the following webinar for us specifically tailored towards keratoconus. The webinar looks at four scenarios taking people at different stages of their lives and demonstrates how technology can support them. The webinar is a mix of real time demonstrations and presentations showing the technology in use.

You can get more information by visiting their website or contacting Glenn Tookey at: glenn.tookey@sightandsound.co.uk or by phone on 01604 798070 or 07776141516.

You can also discuss the recommended products with other members of the KC Group on our Forum.

Fight for Sight – Small Grant Award

This is an excellent arrangement whereby Small Grants of up to £15,000 are awarded for research. Fight for Sight forms partnerships with charities like ours, each providing 50% of the funding. The advantage for Fight for Sight is that the charity’s involvement helps direct the investment into projects that are likely to be cost effective and beneficial. From our point of view it enables the KC Group to put the donations we collect to good use in the secure knowledge that Fight for sight will handle all the financial and compliance controls. Fight for Sight also ask an independent panel of experts to assess the applications for funding.

The object of our latest partnership is to develop a lab-based laser tool that is compact and portable, and therefore easier to use in both a lab and clinical setting. The tool will detect/monitor subtle biomechanical structural deficits that occur during early-stage corneal disease progression; specifically, localised thinning of the cornea.

Here is the text of the full Press Release:

Researchers at Loughborough University will work together with experts in the ophthalmology field to develop a lab-based laser tool that is more compact and portable, and therefore easier to use in both a lab and clinical setting. The tool will detect/monitor subtle biomechanical structural deficits that occur during early-stage corneal disease progression; specifically, localised thinning of the cornea.

It is anticipated that the outcome of this project will mean that patients can receive treatment to maintain and restore their vision sooner. Ultimately, this will also have considerable impact on addressing the national and global cornea transplant shortage. 

Dr Samantha Wilson is leading the project at Loughborough University. She said: “The ability to understand, detect and diagnose corneal diseases, including keratoconus, at an earlier stage would mean that patients can receive treatment sooner. In the long-term, we expect that such devices will be routinely used by surgeons and ophthalmologists to detect, diagnose and treat corneal diseases before they have a significant effect on vision.”

Philip Jaycock is a Consultant Ophthalmic Surgeon and collaborator on this project at Loughborough University. He said: “The development of devices that can measure the strength of the cornea will help earlier diagnosis and allow further investigation of new treatments to maintain vision and potentially improve vision for patients with keratoconus.”

Chief Executive of Fight for Sight, Sherine Krause, said: “We’re delighted to be funding this valuable research project. We know that early detection is hugely important for sight-threatening eye conditions and this in turn will lead to better outcomes for people with keratoconus and other corneal diseases. Eye research is more important than ever in the age of the Covid-19 pandemic and we must continue to fund research for new, more efficient tests, treatments and cures for the leading causes of blindness and sight loss.”

Chairman of The Keratoconus Self-Help and Support Association, David Gable, said: “Late diagnosis is one of our greatest concerns. There is now an effective treatment known as collagen crosslinking that can stop the progression of the disease, thus avoiding the necessity of specialist contact lenses and transplant surgery. We are happy to fund this important research into the early detection of the condition.”

Coronavirus and working from home

Reflections from lockdown by Caroline Condillac

Contemplating the new working environment from a Keratoconus perspective has been interesting

Positives

We are good at washing our hands and being resilient 

For many of us we have to adapt to situations at both home and work and know the importance of trying to protect ourselves from infection

If we are able to work at home, we don’t have to contend with variable vision and lighting affecting our ability to travel to and from the workplac

A corneal graft does not mean that we needed to shield “Fit, healthy recipients who are not immune suppressed are not included in the vulnerable list, it is only if they have other conditions”

Challenges

Eye drops and lenses require us to touch our faces more often

Social distancing makes it harder to see things, I usually like to get closer to see people’s expressions, read signs and find information (saying that I haven’t been out much but as lockdown starts to ease this is likely to change)

Familiar environments have changed to allow for social distancing and so familiar places are different to navigate

Adaptations to a different way of working

I’m fortunate that mostly my job can be done remotely from home. I have found that while everything is done in a virtual way, screen time has increased and I didn’t expect to spend my working day sitting at the dining table. 

Things to consider if not already in place

Are you able to bring screens and office equipment home? I’ve got my larger screen at home which has made a huge difference

Have you picked the best spot at home for lighting? Is there a better place n the kitchen or bedroom that you haven’t considered or is it worth changing location part way through the day

Different ways of meeting

In my working world we are using Teams as our virtual meeting space

Socially and as part of the Keratoconus Committee group we have used Zoom. This has enabled us to keep in to contact and plan to for the future. Although the conference has been postponed, we discussed the importance of having places to meet and share our keratoconus experiences. With people at home the website and forum has seen an increase in visits. Zoom coffee mornings are proving popular and a successful platform to share with others

Time in lockdown has been a rollercoaster of emotions for most people, but it has given time to think, read and consider our lifestyles. This includes a working environment that has changed, certainly in the short to medium term and maybe forever. 

Changes to home working set up

When the news of the late Summer was that I would be working from home until at least Christmas and maybe now Eater and beyond, we were encouraged to take more time to look at working conditions. As both myself and my husband were now co-working from home, we needed to create spaces that would work for longer.

So I am fortunate in that the local authority that I wok for allocated a budget of up to £100 to purchase equipment to enable home working. Speaking to friends, it did seem that many larger companies and organisations had set up a covid fund for this purpose.

I did some online research and purchased a desk and proper office chair as we both had achy backs from months on a static dining room chair! (should have sorted this sooner but didn’t realise we would be at home for so long)

This enabled me to choose a better spot to work in the back bedroom, where lighting is better and my monitor is in a much better position. We have now been asked to complete a DSE (Display screen equipment) assessment and we are then able to apply for funding in addition to the £100 should further equipment be required

Notes to self

  • Undoubtedly you are spending more time staring at a screen so remember to take regular breaks (this was an outcome from an occupational health assessment that I had prior to covid)
  • Be strict on start and end times, just because your desk is now 12 paces from your bed, you shouldn’t be working longer hours!
  • Let your line manager know if you are struggling and ask if there is support for further equipment and/or more flexible working hours
  • Take a proper lunch break away for your screen, spend some time outside or maybe go for a walk
  • Remember that you employer has a duty of care to offer the support that you need

Cross Linking Podcast

Keratoconus and cross-linking with Dr Vijay Anand MCOptom

A good friend and supporter of our group Dr Vijay Anand was recently interviewed on the College of Optometrists’ podcast, about the approach to treating Keracotonus Moorfields are taking .

It was good to hear that referrals to Moorfields are increasing and that patients are younger having been identified at an earlier stage. It is so important that the newly diagnosed get the chance to consider Cross Linking before the disease progresses too much.

Most of the monitoring will be nurse led.

You can listen to the podcast – Here

Cross-linking crosslinking CXL

Sight Loss Needn’t Mean Job Loss

Free 1 Hour Webinar Sept 30th at 10am Every 6 minutes, someone in the UK starts to lose their sight. Visual Impairment is indiscriminate and can happen to anyone at any stage in their life so some of your employees or colleagues could be struggling with sight loss without you knowing. They do their best to conceal the fact that they can’t see as well as they used to which often leads to anxiety, sickness absence, frustration and reduced performance. With adjustments, assistive technology and the right support, employees with visual impairment can, and do, continue to work successfully. This free webinar will cover the challenges and solutions available to overcome them and is suitable for everyone working in Occupational Health, Health and Safety, Wellbeing at Work, HR and Management. Join us on Sep 30, 2020 at 10:00 AM by registering in advance at:https://us02web.zoom.us/meeting/register/tZMkdeiurjopHNeUxw7CVuLCAXtD4mix1xvL

Well Done Ashley

Many of our members will know of Ashley Winter from the talk he gave at the West Midlands branch meeting and his fund raising efforts for our cause. He was due to speak at our June conference which regrettably had to be postponed. Never one to sit back and take it easy, he has been active again and here is a report recently published on the Fight for Sight website.

Hereford man Ashley Winter has set the Guinness World Record for the fastest male blind-folded mile at 10’ 11”, in aid of Fight for Sight.

Ashley, who has the rare eye disease keratoconus, took on the challenge in February to raise money for eye research. After months of waiting for Guinness World Records to confirm the evidence, the 37-year-old received his official certificate last week.

Ashley is a welfare officer for the Defence Medical Welfare Service and served for 14 years. His eye condition means that the normally round dome-shaped clear window of the eye (cornea) progressively thins, causing a cone-like bulge to develop. This results in poor vision, and currently there is no cure.

The event was organised in the run up to Rare Disease Day on 29 February to raise money for vital eye research that could lead to the next breakthrough for sight loss conditions like keratoconus. 

Ashley was diagnosed with keratoconus in 2010 but he is determined not to let his sight impairment get in the way of his passion for adventure and regularly takes part in challenge events to test his endurance levels and physical strength in the face of his condition. 

Ashley said: “I’m delighted that my Guinness World Record attempt had been approved. By doing these challenges I want to prove to myself and to others with an eye condition what can be done if you put your mind to it. By raising money for Fight for Sight I hope to help find the next breakthrough in treating sight loss conditions like keratoconus.”

Director of Fundraising at Fight for Sight Ikram Dahman said: “A huge congratulations and well done to Ashley for his achievement of setting a Guinness World Record. Ashley is a fantastic ambassador for Fight for Sight and we are very grateful for all his work in fundraising and raising awareness for the charity. Eye research was already a hugely underfunded area and this has only been made worse during the Covid-19 pandemic, which is why the support of people like Ashely is more important than ever. We know that researchers are on the cusp of breakthroughs and we can’t let Covid-19 affect out long-term mission – to create a world everyone can see.”

Ashley is now listed on Guinness World Record’s website as the record holder for the fastest mile blindfolded (male).

This has been copied from the Fight for Sight website
which you can visit – Here

VI Talk Podcast

Our very own Mike Oliver was interviewed today by VI Talk for their podcast.

Mike spoke for 17 minutes and hit all the necessary points to inform listeners about Keratoconus. If you need to inform anyone about keratoconus such as teachers or employers, then it would be worthwhile pointing them to this podcast episode. Listen here:

VI Talk is aimed at anyone with a visual impairment, anyone who knows someone who is visually impaired or anyone who has connections with an organisation or group that offers services or support to visually impaired people.

You can find them in the following places.

Facebook, search VI Talk for their Group and Page

Twitter @VITalkPodcast

Website www.vitalk.co.uk

Email info@vitalk.co.uk

Voicemail number 0161 298 8255 Skype name is vitalkpodcast