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!