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

KC Coffee Morning on Zoom



19th September 2020 at 10:30am

This is a good opportunity for those newly diagnosed to meet seasoned travellers and discuss all things KC.

We will be holding our third meeting and anyone with an interest in Keratoconus is free to join us.

You will need to download the Zoom App to your computer or tablet. Then send an email to ukkeratoconus@gmail.com. On receipt of that email, I will send you a link which you will be able to click at the allotted time and as if by magic we should all appear on the screen.

Please join us to discuss all things KC. We are totally open with no pre planned agenda. Ours is a truly bottom up organisation run by members, all of whom have KC or a close connection. There are no silly questions. If you are thinking it, then there is sure to be someone else with a similar idea.

I hope to see you then.

David

P.S. This new technology can be a bit daunting, so I am available for practice. Just send an email to the same address and head it up “One to One”. I will then be happy to send you a personal link and we will be able to have a one to one chat and make sure you are comfortable with the technology.

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VisibilityPublicPublishJun 30, 2020 10:41 amPost FormatAsideGalleryLinkImageQuoteStandardStatusVideoAudioChatStick to the Front PageAuthorClaire SmithDavid GableGraham WardjohnMove to trash2 Revisions

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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

NHS COVID Advice

In light of the current COVID-19 pandemic, we would like to provide some general information for recipients of cornea / tissue transplants and advice around whether you should consider yourself in a vulnerable group.

“Fit, healthy recipients who are not immune suppressed are not included in the vulnerable list, it is only if they have other conditions”

Read the letter – Here

Statement for people who think they have inaccurately been sent communication about being on the shielded list for Coronavirus.
NHS Digital have recently sent texts and letters to patients who are to be shielded from Coronavirus, to give them the information and advice they need.
Read the Statement – Here

Engineers to develop spectacle lenses for keratoconus patients

University of Liverpool biomedical engineer, Dr Ahmed Abass, has been awarded funding from Fight for Sight and Keratoconus Group UK to develop a new type of spectacle lens that can correct irregular astigmatism for keratoconus patients.

The £15k funding award will support clinical validation of the technology with a view to developing it as a new clinical product.

Keratoconus is a disorder of the eye which results in progressive thinning of the cornea. This may result in blurry vision, double vision, near-sightedness, astigmatism, and light sensitivity. It is estimated to affect between one in 500 to 2,000 people worldwide with most cases of keratoconus become apparent during a person’s teens or early 20’s.

The condition causes distorted vision that cannot be corrected using current spectacle lens manufacturing techniques meaning that patients are entirely dependent on contact lenses or in serious cases, corneal transplants.

Dr Ahmed’s project will address the distorted vision with the development of spectacle lenses that can correct non-orthogonal astigmatism.

Dr Abass said: “We have already developed a proof of concept spectacle lens which can be used by kerataconic patients. This funding will be used to take forward the technology and to trial it in a clinical setting. This is an important next step and we hope the outcome of this project will be to take the technology forward as a clinical product, potentially leading to a major step forward in the current prescription system for patients.”

Chief Executive of Fight for Sight, Sherine Krause said: “We’re delighted to be funding this valuable research project, which could help bring forward the development of a new type of corrective spectacle for those living with keratoconus. We know that people with advanced keratoconus find difficulty in their daily life during the times when they cannot wear their contact lenses, so we look forward to seeing the results from Dr Ahmed’s clinical trial.”

The project also involves Dr Vito Romano, Consultant Ophthalmic Surgeon and Mr Andrew Tompkin, Head of Optometry who are with St. Paul’s Eye Unit, Royal Liverpool University Hospital.

Dr Ahmed has a track record of developing innovative solutions that can help keratoconus patients including a recent Knowledge Transfer Partnership with UltraVision which led to the development of a new generation of Kerasoft contact lenses for advanced keratoconus cases.

Knowledge Transfer Partnerships (KTPs) are a UK-wide Government funded programme which enables Higher Education Institutions to work with businesses to improve their competitiveness and productivity.

The University KTP Office offers a full range of services to support academics and companies from the initial enquiries through to the end of the partnership. For more information about KTP and case studies please visit https://www.liverpool.ac.uk/ktp

A New Website – Specialitysight

This is a great new website divided up into four sections:

  • Patients
  • Practitioners
  • Anatomy of the Eye/FAQ
  • Professionals and Industry Associations

The navigation is well laid out and it is easy to find relevant information. Developed by Contamac, the world leader in contact lens and intraocular lens material technology.

Visit the site by clicking this link – Specialitysight

Moorfields Eye to Eye Walk

Each year Moorfields organises this walk from the main hospital in City Road to the London Eye. You can chose the 4 or 14 mile option.

For the last couple of years we have had a small KC team covering the longer route. It is very attractive route and a great opportunity to explore London.

We meet at 10:15 and it takes about 5 hours at a leisurely pace. Do join us, you will be glad you did.

We shall publish a link here when registration opens in the autumn.  Be sure to specify that you wish to benefit Keratoconus.

For more information contact me on 079 2717 8716.

David Gable (Chairman)

 

Registration Opens in the Autumn

2020 KC Team
2019 KC Team
so18 KC Team

Fight for Sight launches survey

Fight for Sight launches survey to gather insights on the personal impact of sight loss

Fight for Sight is launching an online survey to gather broader insights into the personal impact of sight loss and eye conditions. The charity invites those affected by sight loss – either personally or indirectly via someone they care for – to participate in the survey and strengthen the case for urgently needed eye research funding. Continue reading “Fight for Sight launches survey”