Monday, 23 September 2019

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.
 

 

 




Friday, 11 January 2019

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

Monday, 12 March 2018

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

 



 














Sunday, 7 January 2018

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.



Friday, 10 November 2017

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.

Tuesday, 24 October 2017

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.

Monday, 16 October 2017

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!