David’s CXL Story

In December 2020 I underwent cross linking at Birmingham Midland Eye Centre. The procedure was on both of my eyes and I had the operation under general anaesthetic. I am writing this 6 weeks after the operation, so it is all fairly fresh in my memory.

Me and Signing Up To Cross Linking

I was diagnosed with KC as a teenager over 10 years ago. As a teenage boy and then someone entering their early twenties at university, I didn’t want to hear or talk about KC. It’s only in recent years that I have made more of an effort to look after my eyes. I had heard murmurings about cross linking over the years, but it was never something I had considered having done. It was only when I went for my last routine scan of my eyes in November 2020, and was told my condition had deteriorated again since the previous scan, did I decide to sign the forms and join the waiting list for cross linking. I only signed them under one condition however – I must be put to sleep for it. Having heard the consultant talk about the process of cross linking, it sounded like my worst nightmare. No chance could I have that done whilst awake!! I’m pretty sensitive about my eyes at the best of times, so no way was someone scraping a layer off of my eyes with me awake! I was told choosing general anaesthetic would increase my waiting time for the op, and that combined with the Covid situation, I was looking at a lengthy wait.

2 or 3 weeks had passed since being put on the waiting list for cross linking. I wanted to let my work know that I needed time for the operation and I wanted to give them a heads up of when this may be, so I randomly called up BMEC to see if they could give me an estimated date of my op. I was sat there thinking they wouldn’t be able to give me a date, or they’d say Spring/Summer 2021. The response was ‘can you come in December 29th?’ My response was ‘wait, you mean December this year?? In 2 weeks’ time??’ I must have gotten very fortunate and booked myself in somebody else’s cancellation. 

The Operation and Recuperating

In these Covid times, I had to self-isolate 2 weeks before the operation. A few days before going to the hospital I had to take a Covid test – that wasn’t a pleasant way to start Christmas Eve! I also had my temperature regularly checked whilst at the hospital. All was safe. 

As for the operation itself, I cannot tell you anything about the experience. I have heard various stories from people who have had cross linking under local anaesthetic, and I have not heard any horror stories. It just sounds a little uncomfortable. It’s all good me saying that in hindsight though, I am very happy with my decision of general anaesthetic.

When I came around after the procedure, my eyes were in a fair bit of pain. I had read someone say the pain was like gravel being stuck in your eyes, I can probably agree with that. Hot gravel.

Having had general anaesthetic, you need to eat something and go to the loo before you can be discharged. My Dad then picked me up and took me home .I went into my room, or cave as it was named due to the darkness inside, and more or less stayed there for 5 days. That’s probably how long it took for the pain to go from my eyes. I kept my eyes closed throughout the 5 days and took my eye drops given to me by the hospital four times a day – anti-inflammatories, anti-biotics and steroid drops. It was a bit difficult at the start to put in the drops – my eyes were sticking closed so it felt wrong/uncomfortable to open them for eye drops. It got better as the days went on. I got given an eye mask at the hospital to wear for sleeping (so you don’t rub your eyes in the night). The pain got less and less over the 5 days, until I finally started to open my eyes for extended periods of time, and then the next challenge began – adjusting to light. Having been through an operation and been closed in a dark room for 5 days, it took a while for my eyes to get used to any kind of light in the house. I built it up slowly, day by day, and bit by bit I could watch TV for longer/look at my phone more often/be in a room with lights on. 

After two weeks I was only on the steroid drops twice a day, as these were still needed for a further two weeks. I went to the hospital for a post op check and was told my eyes were OK but still recovering. I originally took two weeks off of work as I had been told I could potentially wear my contact lenses again at this point after the operation. But the hospital signed me off for another two weeks so my eyes could further recover. I don’t have glasses I can wear, so me trying to work without lenses would have definitely been a strain to say the least! Thankfully my work were very understanding about the situation.

Now and After

I have been back at work for two weeks now and more or less returned back to normal life. The contact lenses I am wearing are those fitted for me from before the operation. There are good days and bad days with them at the moment. There’s no guarantee the lenses will give you the same level of vision/ comfort as before the op  And there is no point going to get any more fitted as your eyes are still stabilising 6-9 months after cross linking. I believe this is the same for glasses wearers. So the next steps for me are to wait for the next post-op appointment in March, and then see the contact lens people in June for a contact lens fitting for my (hopefully by then) stable eyes.

I don’t think I’m currently in a position to comment on the success of the cross linking procedure – I will have to wait a while yet. It’s important to remind myself that it’s a long term benefit, no matter how impatient I’m feeling!

Tips

  • Have entertainment to hand: download all the audiobooks/podcasts you can find! Between those and the radio, there’s not much else to do when you’re in the early stages of recovery. If you have an Alexa/Google Nest type thing which has voice control, that’s a bonus!
  • Know the layout of your surroundings: you probably think you know the way around your room with your eyes closed – well recovery is the perfect time to test that theory! Make sure there aren’t any hazards in the way and that things you may need to access are in easy places.
  • Talk to people – make sure you’re still connecting with people! I was sending voice messages to friends/family over the new year. In particular it was helpful to communicate with someone I met at the West Midlands KC Group. She had had cross linking done a few years ago, so getting her insight/tips were very useful.

Read other Member Stories on our on our Blog – Here

Sight and Sound Technology

Sight and Sound are hosting a webinar for us specifically tailored towards KC. The webinar takes 6 or 7 cases covering people at different stages of their lives – children, teens, students at university, young people in work and those at a later stage in their lives. They will look at how the condition manifests itself and map the impacts into various scenarios and look at how the technology can support those with the condition. The webinar has a mix of real time demonstrations and presentations showing the technology in use.

The topic “If only I’d known….”, has been chosen because it is what people always say. Technology is developing so fast we simply do not know what is out there. You can now get what looks like a small pen and clip it to your glasses. It contains a camera linked to your smart phone by Bluetooth. It will read a menu just by running your finger over its surface and when you go outside it will read the shop signs. If you walk into a room it will tell you if someone is there either sitting or standing and even their name if you have seen them before. Someone the other side of the world will be able to see what is in front of you and direct you down the street.

This is a fabulous opportunity to see what is available.

The Webinar will take place on Tuesday 9th March, 2021 at 18:30

To Register in advance for this webinar: Click here

After registering, you will receive a confirmation email containing information about joining the webinar.

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

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

I am a parent of a Keratoconus sufferer

So I am a parent of a Keratoconus sufferer. Since she was diagnosed at 16 I have struggled to understand what my daughter goes through on a daily basis.
I have wanted to post Brooke‘s experiences so often but it never felt right.
Now I want to tell her story and hopefully it can resonate with other sufferers.

Continue reading “I am a parent of a Keratoconus sufferer”

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

West Midlands Meeting Venue

I am very sad to report that our meeting venue in John Lewis Birmingham will no longer be available to us following the Company announcement yesterday which you may have seen. I have now had the following formal communication:

“John Lewis & Partners Birmingham is not reopening following the temporary closure due to Coronavirus. This means all Community Hub bookings are cancelled with immediate effect.”

I have also had a personal message from the organiser in control of the room bookings thanking us for our support, saying how sorry she is and wishing us all the best for the future. Her job has gone as well. I have thanked her for all she has done for us.

Frankly, I cannot see us being able to hold any meeting for at least the rest of this year and we will have to consider our options but if anyone has any suggestions then please let me know.

Stay safe

John