Overview of 2020

Given the world we’re currently living in and not knowing when normality will be back, David Gable (Chairman of the Keratoconus Self-Help and Support Association), organised a Zoom call in June 2020. 

There were only 6 of us, but we wanted to see how it would go. This was to replace the committee meetings that were taking place at Moorfields. We didn’t want the support network to disappear because we were in the middle of a pandemic and this was the time more support than ever was needed. 

The first call was a success, so David organised another in August 2020 and started advertising them via the website. There were at least double the amount of attendees the second time round and this is when we realised there was a big interest. 

This led on to us arranging these Virtual Coffee Meetings monthly with a topic focus on each call. I then started advertising the calls via Instagram and from this we have found more KC sufferers looking for help! 

So far we have hosted calls to discuss ‘Ghosting’, Help at Work and Collagen Cross Linking (CXL). 

Anne Klepacz (Secretary of the Keratoconus Self-Help and Support Association) kindly typed up some great notes from the last two Virtual Coffee Meetings, which I will publish in separate posts. 

If you were unable to attend these calls, we hope these notes are helpful. We are also open to topic ideas, so please get in touch if you need any support from us! 

Overall fundraising efforts

The fundraising activities you see published in this blog have gone towards the UK Keratoconus Self-Help and Support Association and has enabled them to remain solvent and make some valuable donations. 

Prior to the fundraising efforts from myself and the company I work for, they ran on a very unreliable income stream, which only just about covered their printing and postage costs. During the early stages of the fundraising the funds went towards the 2016 conference, for which they did not receive a lottery grant for. It also enabled them to contribute funds to the Moorfields/UCL Genetic study. Since this time, they have been funding the training of 4 NHS optometrists in the specialist fitting of Sclaral lenses and have contributed a further two small grant awards in partnership with Fight for Sight who matched their contribution. The first award in 2018 was into the relationship of corneal nerves and KC and the second in 2019 was towards the development of specialist spectacle lenses to reduce the reliance on contact lenses. 

They ended up receiving a lottery grant and their finances are in a much better state than they expected. They also now continue to receive funding requests from others. 

Keratoconus Group AGM at Moorfield's March 2019

Back in March this year I attended the Keratoconus Group AGM at Moorefield's.

 

The Chairman's report at the AGM mentioned mine and Barbican's support and stated 'Our grateful thanks must go to Amy Musto and her employer, Barbican Insurance for their generosity and support.'

 

It was great seeing everyone, catching up and meeting new people with KC.

 

David Cable, Chairman opening the meeting with a brief introduction and update; David thanked myself and Barbican on several occasions throughout the meeting for our support. The charity group now has £29,000 in assets, £7,500 of which has been used for the grant with Fight for Sight in research. The conference takes place every 2 years and the next one is due in 2020. Attendance is up and down however, a DVD is produced for a wider audience and it's an opportunity for a variety of consultants to come together and present. There are now other groups in Brighton, Scotland and Bristol so the support network is slowly spreading across the country.

 

One of the members has published his own book based on living with Keratoconus - Ashley Winter decided to write a book to show others what can be achieved if we put our minds to it. If you would like to purchase a copy it's being sold on amazon: https://www.amazon.co.uk/KERATOCONUS-ME-personal-struggle-Keratoconus/dp/1791672558/ref=sr_1_1?ie=UTF8&qid=1553507147&sr=8-1&keywords=keratoconus+and+me

 

The main take away from attending this AGM was hearing about the update on the genetic research study which started 2 years ago. Alison Hardcastle, Professor of Molecular Genetics Deputy Director was the guest speaker and presented with a very detailed and interesting presentation.

 

Some updates from Alison's presentation:

 

KC is more common than you think and affects 1 in 1620 people. From this study and looking at patients at Moorfield’s Stephen Tuft, Professor calculated that roughly 55,000 of people in the UK have KC.

 

The Genome Wide Association Studies has proven very challenging as there is on average 5 million different genes in our human genome.

 

They have been collecting DNA data for the past 15 years and used over 3,000 KC patients DNA (including myself) for this study. The data that has been collected and reviewed will be published in a couple of weeks; Alison should hopefully be able to bring this with her to the CSR week.

 

Achievements:

• Getting the information on what genes could be involved
• Data; there appears to be some variants in some genes that could be linked, starting to get a slow picture of which genes are linked to a good cornea and which are linked to KC, now need to know why
• They think they have found 30/40 genes involved in the risk of KC, 20 of them being new; the genes do not work on their own, they work together through pathways

Goals;

• What is the mechanism of the cause; more investigation is required


• Association with other conditions


• Develop/Improve new therapies

Causes:

• Environmental effects are being looked into such as eye rubbing


• A greater understanding is required in genetic variation in skin conditions to see if there could be a link

Issues;

• There is still a clinical problem as to if KC is suspected or definite, this is an area that is being looked into as part of the research


• Lack of marketing at high street optician level, this is also going to be looked into; KC still gets overlooked at times by the optician however, they are trying to set up new courses at Moorfield’s to improve opticians awareness


• Lack of donor tissue; 20% of KC patients require a transplant of their cornea and there is still a shortage however, the UK law for organ donations is changing in Spring 2020 and it will become an ‘opt out’ or ‘deemed consent’ system. https://www.organdonation.nhs.uk/about-donation/how-the-law-is-changing/ - this could improve the shortage.

 

 

 

What it's like to see through someone else's eye - Metro News Article!

Finally, people are speaking up about the lack of cornea donors!

I've just read a really interesting and heart-warming news article on patients that suffer with Keratoconus and have required a cornea transplant.

Waiting lists are still long and in 2017, the number of eyes in banks in the UK were 21% below what is needed.

According to NHS Blood and transplant, for those who choose to omit one of their organs from donation, the corneas were the most popular at 10.6%.

These patients have been lucky enough to receive a donor cornea, one quoted "It didn't just change my life. It changed my little boy's life too. He's three and what human being doesn't want to improve the lift of a three-year-old? I explain to him that somebody gave mummy a really amazing present and now mummy can see better".

Another quoted "My right eye has seen significant changes, and it's made me realise how bad my left eye really is in comparison".

Please take some time to read this news article http://metro.co.uk/2019/01/09/like-see-someone-elses-eyes-8322719/

It just shows the importance of cornea donors! It only takes two minutes to join the NHS Organ Donor Register at http://www.organdonation.nhs.uk

Eye to Eye 14 mile walk

This time last week I walked 14 miles with a team of KC supporters from Moorfield's Eye Hospital to the London Eye! It took us 5 hours to complete the walk and was a massive achievement for everyone who participated!

The event was organised by Eye to Eye, run by Moorfield's Eye Charity. Eye to Eye raises funds for pioneering research into eye disorders. Donations raised have helped support vital research projects including studies exploring the genetics of keratoconus and the impact of diabetic retinopathy on a the structure and function of the eye.

Myself and my friend Natalie had a joint Just Giving page and managed to raise a total of £295 so far! We would like to thank everyone who supported us and all fundraising will be going towards the Keratoconus research at Moorfield's Eye Hospital. 

#EyetoEye #TeamMoorfields

 

 

Happy New Year

I had my yearly check-up at Moorfield's Eye Hospital last week and received the amazing news that my scans were identical to last years! I no longer require a yearly check-up at Moorfield's, unless the opticians notice a sudden change in my eye sight.

I want to thank the ophthalmologist at Specsavers who caught the condition at such an early stage back in 2013! A lot of people I've been in contact with who suffer with KC had been misdiagnosed at their opticians. KC can take control of your life and I feel very lucky that the progression of KC in my eyes has completely stabilised.

Since 2013, I've raised an incredible $31,000. Thanks again to Barbican Insurance, my friends and family for continuing their support. In addition to that I would like to massively thank Aon Insurance for raising nearly £10,000 at their annual Aon Market Lunch in November!!

Reaching just over £40,000 in 4 years is such an achievement! In 2012, the Keratoconus Group only raised around £1,000. Now with the extra support they're able to support those who suffer and help towards the research at Moorfield's.

World Keratoconus Day!

It's that time of year again, November 10th - World Keratoconus Day!

I'm continuing with my support in raising awareness by announcing that since 2014, we've raised a total £22,500 and by end of this year we could reach up to a total of £35,000.

This year fundraising has not only just come from Barbican Insurance but also Aon UK Ltd. Aon is hosting a fundraising event called the Aon London Market Lunch and the guest speaker has the opportunity to select a charity to support each year. The guest speaker is a colleague of mine from Barbican and has kindly selected the Keratoconus Self Help and Support Group! This event is taking place on Friday 24th November and they usually have between 250 and 300 attendees.

The fundraising will continue to help towards the research that's currently going ahead at Moorefield's Eye Hospital.

I will also be hosting a charity Mecca Bingo night with my close friends and family next week to raise awareness!

On a day as important as today it would be amazing to see more donations. Please click on the link below to donate: https://www.justgiving.com/kshsa

Thanks again to everyone who have donated so far and especially to Barbican Insurance for all of their support.

Frequently asked questions

At the Keratoconus Group AGM meeting Mr Damian Lake (a consultant ophthalmologist, Corneal and Refractive Surgeon) presented on the different types of treatment available to those who suffer with Keratoconus,


Although I've had CXL and 4 years down the line my eyes still appear to be stable, attending the meeting and listening to the presentation made me feel more relaxed in case I need further treatment in the future.


I feel that the questions asked would be frequently asked by others who suffer and would be good to publish.


Please see below the questions asked and responses from Mr Damian Lake:

• How long will CXL treatment work for? There is insufficient evidence to answer this at present, but when we looked at our figures only 8% of people required crosslinking within 5 years. I would say for most keratoconus, it is a one time treatment.
• Can CXL treatment be repeated, if so how many times? Yes cross linking can be repeated, there is no reason it could not be repeated multiple times provided that there is sufficient corneal thickness.
• What other treatments are available? We also provide intracorneal ring placement with femtosecond laser channel creation, femtosecond laser anterior lamellar cornea graft, femtosecond grafts and phakic intraocular lenses (implantable contact lens, artisan lens) and in some cases pinhole intraocular lenses.
• Are there risks to these treatments? Yes all treatments have risks, including visual loss, infection, failure. The relative risk will depend upon the treatment and the patients circumstance.
• Can astigmatism be improved? Yes there are various methods to improve astigmatism. The treatment selected would depend upon whether the astigmatism is regular or irregular, and its magnitude. For low level astigmatism, excimer laser combined with CXL maybe an option. Higher levels may require combination treatments and will vary case by case.

Speaking to those who suffer!

On Saturday 14th October I attended the Keratoconus Group AGM meeting at Moorfields. These meetings are held twice a year and a great opportunity to find out the different treatments available, ask questions and to meet others that suffer with KC.

I learnt that there is no way to track the progression of KC and each individual who suffers is effected differently.

There is no better place to go other than Moorfields! I highly recommend them for their support, consultants and variety of treatments available. Other hospitals don't always offer all treatments for those who are early stages of KC.

Speaking to others, I've realised even though there is a support group, they found it difficult to find the different treatments available and to speak to others in the same situation. Social media is huge in today's society and we need to take that as an opportunity for raising awareness and coming together to share our experiences.

We're all individuals but we're in it together to raise awareness!

New Story Alert!

I've posted a new story, which is from a member of the Keratoconus Self Help Association (KC Group). I found this story very touching and even though David was diagnosed in 1972, I found that I can relate to some parts of his story, i.e. sensitive to light and astigmatism.

These stories make you realise how important it is to talk to others who suffer and together, we will continue supporting each other, spreading the awareness and raise money!

A great quote from David "Life is a sandstone, it either grinds you down or sharpens you up, depending on the stuff you are made of."

Please take a few minutes to read David Gable's story.

Back up and running

The last few months have been a little hectic and I haven't had the chance to post updates on my blog.

I've also been having issues signing into my Gmail account, so I apologise to those that I haven't responded to!

I'm now back up and running and will be responding to all emails.

I also hope to arrange another fundraising event this year so look out for the posts!

Keratoconus research update

I recently received amazing news that the research myself and Barbican Insurance helped to support has been accepted as a presentation at the American of Ophthalmology. It has proven to be an exceptional piece of work that will open many new avenues for study and potentially for treatments.

Moorefield’s are also finalising their collection of over 3000 samples from individuals with keratoconus for submission as the largest genetic study ever published in keratoconus. This is a once in a generation opportunity, with collaboration between a number of international centres.

This has proven how important the Keratoconus Fundraising is that I’m supporting. The more we continue to raise awareness, the more samples can be added to this study, which will increase the power of the study!

The fundraising will continue and I’ll never give up, the more support I can get behind me the better!

We are in control of keratoconus, it will not control us!

 

4 years on...

 

Nearly this time 4 years ago I had CXL treatment on both eyes, a year after I was advised that the condition had stabilised however I had not been contacted for a check-up since. I decided to get referred to Moorfield’s Eye Hospital as they have a clinic for those who suffer with KC and ensure patients are seen annually.

 

I received the great news that the condition has not progressed and after having CXL it should be stabilised. There are no answers to how long CXL could stabilise keratoconus, for all we know it could be forever!  

 

Whilst waiting to be seen by an optometrist, I was invited to take part in the clinical and genetic basis of keratoconus research study. I was advised this would be voluntary and all that would be required is an eye examination (which I was in the middle of having done anyway) and to give a 20ml blood sample. The laboratory will extract the DNA from the cells in the blood sample so that it can be used to study the genes.

 

Research has shown that genetic factors have an effect of the risk of someone developing the disease and this study would give the opportunity to see if genes that affect the risk of keratoconus could be found.

 

So far, just over 2,000 patients with keratoconus have volunteered and once they have 3,000 patients DNA the study will be carried out.

 

Finding the genes is a major challenge and may take many years but to speed up the research they may join forces with other research teams in the UK or abroad.

 

When receiving this invite, I did not hesitate once and accepted to become a volunteer immediately. We are in control of keratoconus, it will not control us!
 

 

Lloyd's Charity Awards

 

 

On Wednesday 14th December I was lucky to collect a Lloyd's Charity Award.
 

The Lloyd's Market Charity Awards are donations to charities supported by individuals from across the Lloyd's market. The awards are run by the Lloyd's Charities’ Trust, a grant making charity which provides charitable donations on behalf of the Lloyd's market.
 

Donations are given to charities supported by individuals working in the market in recognition of their fundraising and voluntary work, and to charities that have given invaluable support to those in the market whose lives have been affected by difficult circumstances.
 

I nominated the Keratoconus Self-Help and Support Association for a £2,000 award and out of 60 applications I was very lucky to have been selected amongst 29 other inspirational causes.
 

I invited two members of the charity (Anne Klepcz and Dave Gable) to the ceremony, who found it an inspiring experience and fascinating to see the inside of the Lloyd's building.

 

Since October 2013, when I started fundraising for the Keratoconus Self-Help and Support Association, with a huge support from Barbican Insurance, by the end of 2016 we would have raised a total of £22,500. This has had a huge impact, with the charity being able to approve a grant for research at Moorfield's Eye Hospital. We will also been continuing our support so the charity are able to approve more research going forward.
 

 

WORLD KERATOCONUS DAY!

Today is the first World Keratoconus Day organised by The National Keratoconus Foundation in the US. Their aim is to spread the word all over the world. #WorldKeratoconusDay

 

So today, I'm spreading the word by celebrating and announcing that on top of Barbican Insurance providing the Keratoconus Group (UK charity) with £7,500 this year, I've also received a charity award from Lloyd's of London with a donation of £2,000! In 2012 the charity had only received about £5,000. By the end of this year, we would have donated a total of £22,500!

 

Our fundraising has helped in many ways but one thing that really stood out to me is that the charity has been able to accept a grant for research at Moorefield's Eye Hospital this year (images below), in hope to find the cause behind this awful condition. The fundraising can't stop here, the more we raise, the more support we can give!

 

On a day as important as today it would be amazing to see more donations. Please click on the link below to donate: https://www.justgiving.com/kshsa

 

It doesn't matter how big or small, anything would make a difference to such a small charity.

Thanks to everyone who have donated so far and especially to Barbican Insurance for all of their support.

 

 

Keratoconus for life

Keratoconus is a condition for life until we're able to find a cure.

So I thought I would get something else for life...

I designed a symbol that would have a meaning behind this condition - A twinkle, it could represent a star to some of you but to me it's a twinkle of the eye. I might have an eye condition not known by many but I'm lucky to currently have this condition under control, others haven't been as lucky and I'm hoping this will become a trend for those who suffer.  

Keratoconus Group 25th Anniversary Conference

Thanks to all the fundraising efforts so far the KC group were able to organise their largest event this year which I attended on Saturday 17^th September.

The Keratoconus Group 25^th Anniversary Conference was organised for members which celebrated 25 years since the very first KC Group support meeting and 20 years since they became a registered charity.

Mike Oliver (Chair of the charity) had made a couple of funding applications to help cover the costs of the conference however the money that I’ve raised together with Barbican Insurance had contributed significantly. The members of the KC Group could not thank me enough at the conference and said our fundraising has helped enormously.

It was also announced at the conference that the KC Group were able to approve a grant for funding a research project that is part of a larger programme of genetic research into Keratoconus, led by Stephen Tuft, corneal consultant at Moorfields Eye Hospital. It was mentioned that in previous years, the KC Group would have had to say no to a request like this, but thanks to our efforts, they have been able to approve the grant. I’ve also been given the opportunity to visit the research facility at Moorefield’s Hospital.

It was amazing to hear that our fundraising efforts have had a huge impact for the KC Group and we will continue with our support.

There were some great speeches from professors, ophthalmologists and members themselves who helped support others who are suffering.

   

Crosslinking Treatment for Keratoconus

Treatment I was very lucky to have done but others are too late. 

Keratoconus has increased and now occurs 1 in 500 people vs 1 in 2000 in the past. 

Please take a minute to have a read, if you have any symptoms or concerns visit your opticians! ❤️👁

http://www.keratoconusinserts.com/c3-r-cxl-crosslinking.html

Around the World in 80 days Barbican Challenge complete!

 

I am delighted to confirm that Barbican officially made it around the world in 80 days and raised just over £5,000 for the Keratoconus Group!

 

Thanks to the 105 staff members who actively participated and completed this event by the 31st August.

 

Photo: Gaudi Park, view of Barcelona

Around The World In 80 Days Barbican Charity Challenge

The Barbican Charity Group are delighted to announce the 2015 Barbican staff charity initiative: ‘Eighty Days Around the World’ to raise awareness for three charities including Keratoconus. The challenge is to see whether Barbican staff members and contractors can collectively walk, cycle, run, swim, sail etc the equivalent circumference of the earth (40,000km) in 80 days.

We will be organising a number of group events (starting with the Crisis run on 11^th June and ending on 30^th August). I will be updating my blog as we do these group events.

As well as participating in group events, individuals have also set themselves targets during the 80 day period to help complete this challenge.

We will be recording the mileage through a Strava Barbican Group account, Barbican pedometers and self-assessment if Strava or pedometers are impractical.  

I have set myself the challenge to ice skate and cycle 200k within the 80 days!

You can track us but clicking:https://www.strava.com/clubs/123645

We’ve also set up a just giving page for all donations:https://www.justgiving.com/Barbican80Days