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Vision

Will glasses help?

January 19, 2021
I am standing holding a board that reads “No glasses won’t correct my vision, I’m going blind!” I have my hair in plaits and a black jumper on.

This is something that I get asked a lot. “Can glasses help with your eyesight?” The short answer to this is no. My eye condition (stargardts) is a genetic disease that causes a build up of something called lipofuscin on my macular. This is simply because, unlike the rest of the population, vitamin A which is good for the eyes, is actually toxic to mine. It is this that causes the damage to my retina (see picture below). 

the inside of my eye showing the damage.
The inside of my eye showing the damage.

Glasses help correct people’s eyesight by allowing eyes to focus light on the right spot of the retina. This cannot happen in parts of the retina that are damaged and vision is being or has been lost as no light can pass through. 

With my eye condition, it is central vision loss, so I still have clear and useful peripheral (side vision). Some people choose to wear glasses to aid their peripheral vision only, but this will not correct any of the central vision. As time goes by and the central vision declines, glasses for the peripheral vision man also stop being useful. 

a close up of the board which reads “No glasses won’t correct my vision, I’m going blind!”
A close up of the board which reads “No glasses won’t correct my vision, I’m going blind!”

As you can see in my picture, I have glasses on with an orange lens. These (other than sunglasses) are the only glasses I use regularly, but they aren’t for correction, they are blue light blockers and have full UV protection for when I am using a screen, or lights are too bright for me and on cloudy days where sunglasses are too dark. 

I hope this helps people underhand a little bit more about sight loss and blindness and why we cannot just fix this with a simple pair of glasses. 

Vision

Low vision awareness month and Stargardts disease

February 11, 2020
what is Stargardts disease wording and a picture of me

February is low vision awareness month. I thought this was a good opportunity to talk about my eye condition, Stargardts disease, that is taking away my precious eyesight. 

Stargardts disease is an incurable, progressive, genetic juvenile eye condition, so I have this through no fault of my own. I had regular eye tests my whole life, but nothing was ever picked up until I was 31, even though I never had 20/20 vision. Stargardts disease is caused by a fault in my Abca4 gene that means I cannot process vitamin A properly like other people can and vitamin A is not good for my eyes at all. The vitamin A causes a build-up of something called lipofuscin on my macular inside my eye. The macular is used to see fine detail such as faces, reading and writing, watching TV etc. The macular is responsible for everything you see in your central vision and when that is damaged, life starts to get difficult. Stargardts affects both men and woman equally and both eyes, but is a very rare condition, with only 1 in 12000 people having it. 

Eye Scan
Eye scan showing damage around the macular – Group of white dots around the black shadow which is the Macular.

Stargardts causes low vision, often leading to legal blindness. Blindness does not always mean just seeing black. A person with Stargardts can be classed as legally blind, but still has some useful vision to help them get around and sometimes without having to use any visual aids.

Eye Picture
Eye Picture

When I think back to my teenage years. I think I have had blind spots for a long time, but because nothing was ever picked up at my opticians appointments or flagged up, I never thought anything of what I could or couldn’t see as I thought it was how everyone saw. In my 30’s I started to realise I couldn’t see well in low lighting and started to have lots of heavy flashing in my central vision and that’s when my new opticians found my macular damage and referred me to hospital. 

I find there is such a lack of empathy surrounding vision loss. I personally think that because blindness isn’t something that makes you ill or is life limiting, people don’t understand the impact it has on your mental health and how devastating a diagnosis of incurable vision loss can be. I am in a constant state of anxiety about my vision loss progressing. Losing the ability to recognise my children and being able to drive and be independent really messes with your head some days and it’s certainly not an easy journey. Knowing you are going blind and there is nothing you can do about it is soul destroying and it is on my mind many minutes of the day, every single day of the week. I never get a break from it, because I can see all my blind spots and the constant flashing from the moment I wake up, to the moment I go to bed. 

'How I See' Example Picture
‘How I See’ Example Picture

I have tried to create a picture of how I see. This is in certain lighting, especially dim lighting and when I have to adjust to a lighting change. As you can see, this is why I don’t always recognise my own child coming out of school. I can see clearer from the very centre as I have slight foveal sparing for now, which enables me to see through my very central. I hope this gives my followers some understanding of Stargardts disease and what someone goes through who is living with it ♥️.

Vision

World Sight Day 2019

October 10, 2019
World Site Day 2019 - Me with my sunglasses on.

Today is world sight day and ironically mental health awareness day too. As most of you know, I was diagnosed with Stargardts 2 years ago. Unfortunately, there is nothing that can be done for my eye disease, no treatment and as of yet, no cure. I have in those 2 years, lost 2 lines of the eye chart in both eyes and am only just hanging on to my driving licence. Stargardts is robbing me slowly of not only my eyesight, but of my independence.

World Sight Day Image 2019
World Sight Day Image 2019

This has obviously had a massive impact on my mental health. I take steps every day to try and keep my anxiety at bay. A long daily walk, taking time out to breathe, eating properly and getting as much sleep as I can (which isn’t easy with a baby) if I don’t do these, then my vision will wander into my main focus. Blogging has been very freeing for me; it allows me to write down my thoughts and feelings and know that I am not alone in this disease.

World Mental Health Day Image 2019
World Mental Health Day Image 2019

My Stargardts is rare and incurable, but so many eye conditions aren’t, and the majority are fixable and treatable. People often ask me why I bother to tell people to get their eyes checked, when one eye test changed my whole life, but that is because I was unlucky, but so many people aren’t and the sooner a condition is detected, the sooner it can be treated and vision loss could be prevented. If someone doesn’t have to walk the path I am having to, then I will continue to urge anyone reading this to go and get their eyes checked to protect their eyesight, including your children too. I would do absolutely anything if I could to protect mine, but I can’t, so for now I will just continue wearing the biggest oversized sunglasses I can find, to protect my already failing eyes as much as I can and ask you all to get your eyes checked. Your eyesight really does matter ♥️.

Vision

National Eye Health Week

September 24, 2019
A close up of me with a black top on and my dark hair down. I have orange tinted glasses on and bright pink lipstick.

From the 23rd September until the 29th September, it is National eye health week.

Other than these orange blue light blocking glasses, I look the same as everyone else. My eyes are shiny, bright and on the surface, they look completely healthy.

2 years ago, almost to the day, I never in a million years thought I would be told by an eye specialist that I was going blind from Stargardts disease. My condition is rare and unfortunately, there is no treatment to help me, but only around 20% of eye conditions are incurable. That means around 80% could be treated before vision is lost or the retina damaged.

Eye Health Week
National Eye Health Week

If you know you haven’t had an eye test in the past couple of years, I urge you to get yourself booked in. Our eyesight is often taken for granted, but when we are losing it, I can’t deny that it is heart-breaking. Even if you know your eyes are ok and have been for an eye test recently, please remember to wear sunglasses, even on the overcast and bright days as UV rays can still cause damage. Please don’t forget children too as their eyes are so delicate as they are growing. Happy eye health week. Make it a week that you make some helpful changes for the sake of your eyes and your precious vision. 😎💜

Vision

Low Vision Awareness Month

February 22, 2019
A clock with the middle portion blurred out due to central vision loss.

February is low vision awareness month, so I thought I would do this blog post explaining some of the terms used when discussing vision loss and blindness. Whenever I tell people I have a problem with my eyes and am losing my central vision, a lot of the time I am asked how that is possible and they would never have known, because I have lovely eyes and they don’t look like there is anything wrong. When we think of blind or visually impaired, or when someone is losing their vision, we expect there to be something visible to give it away. Some people think your eyes should be cloudy, or look different in some way, but this is often not the case at all. A lot of people with vision loss can also get around quite well without the use of a cane or a guide dog, because they keep a useful portion of their vision. When my central vision depletes with Stargardts, I should still retain my side vision. In some rare cases some people can lose more vision than just the central, but I can expect to keep my peripheral, so even though I may not be able to see someone’s face who is walking up to me, I may still see the rest of their body up close and surrounding environment. The further you look out into the distance with central vision loss, the blind spots for me get bigger than when you are looking at something up close like a book, so when central vision is lost, you may not even see someone at all further away. 

I thought I would run through what some of the terms mean when people talk about vision loss and blindness, so that others can understand a little bit more on what someone can or can’t see. 

What is visual acuity and field of vision? 

6/6 vision is a term used to express normal visual acuity (the clarity or sharpness of vision) measured at a distance of 6 metres. If you have 6/6 vision, you can see clearly at 6 metres what should normally be seen at that distance. 6/60 vision is 10 times poorer than ‘normal’, i.e., the patient sees at 6m what a person with normal vision sees at 60m. 

When you go for an eye test, an optician will use a Snellen chart to determine what your best corrected visual acuity is. This will be which line you can read from on the chart. With Stargardts, the damage to the retina usually means that vision becomes uncorrectable the further the disease progresses.  

Sometimes a person can have a visual acuity of 6/6 but have blind spots in their peripheral or lack of depth perception etc which can all affect your overall visual ability. 

Your field of vision is measured by a “visual field test”. you will usually have had to have lost a large part of your visual field to be certified as severely sight impaired (blind) or visually impaired. 

The Snellen chart which is used to measure visual acuity.
The Snellen chart which is used to measure visual acuity.

Visually Impaired 

Visually impaired covers a whole spectrum of vision loss which can range from low vision through to total blindness. Some also include those who have a decreased ability to see because they do not have access to glasses or contact lenses or have something like severe light sensitivity affecting their vision. 

Low Vision

Low vision is uncorrectable vision loss that interferes with daily activities. For someone with Stargardts they may have lost all of their central vision but still have use of peripheral vision (side vision) but are unable to read, recognise faces or drive. A person classed as having moderate low vision may have a visual acuity in the range of 6/36 to 6/60 and may need visual aids in their daily life. 

Visual Aids
Visual Aids

Legally Blind

In the U.K, legally blind individuals are those whose visual acuity or sharpness (with glasses, if needed) is 6/60 or worse (the top line of the Snellen chart) and/or a visual field of 20 degrees or less.

Distorted Snellen Chart Image
Distorted Snellen Chart Image

Light Perception

Light perception is the ability to interpret the surrounding environment using light in the visible spectrum reflected by the objects in the environment. This is different from visual acuity which refers to how clearly a person sees.

Complete Blindness

Complete blindness is full lack of light perception. About 15% of the total population of the world who is blind have absolutely no light perception at all while 85% of blind people have some light perception. 

My Vision

I am so lucky to have foveal sparing at the moment. So, for me I still see at 6/9 in both eyes but have damage around the very outside of my very centre of vision that includes blind spots. This I believe, is why I never noticed I was losing my vision before my diagnosis. I am currently not classed as low vision but will find out in April if it has deteriorated and I can’t deny, I am extremely anxious about this appointment and it seems to have come around too fast. If it has deteriorated, there is nothing I can do about it anyway and I am trying my hardest to preserve what vision I have left, so I can’t do anymore. I hope this has helped people understand a bit better about the terms used when describing vision loss. 

Picture showing half of my face and one eye in black and white.
Picture showing half of my face and one eye in black and white.
Lifestyle Vision

A Roundup of my 2018

December 30, 2018

As 2018 draws to an end, it has made me reflect on the year that I have had. When I was diagnosed with Stargardts in 2017, for a good few months it honestly felt like someone had ended my life. I was lost, confused and scared for much of the rest of that year following my diagnosis and I was consumed with the feeling of ‘why me’. I was grateful when my little boy suggested that we do something to help my condition in the only way we could have, and that was to raise money for Stargardts, so at the end of 2017 we started up a just giving page and signed up for the eye to eye walk in London ran by Moorfields eye charity. Throwing myself into that and having so much support from others going in to 2018, made a big difference to my emotional state. Instead of feeling useless by something I couldn’t change, I felt like I was doing something to help myself and for the first time since my diagnosis, I felt my spirits lift and felt motivated.

My husband and son walking in London.
London 2018

After the success of our eye to eye walk and raising over £2000 for Stargardts, I decided that because my condition was so rare and very little people knew what it was, I was going to try and raise more awareness. In May 2018, I started up an Instagram account to bring more attention to juvenile vision loss. Instagram proved to be an exceptional support network for me, and I have met some amazing people on it this year who I speak to regularly and have become my firm friends. It is amazing how complete strangers can be so much more supportive than some friends and family, but that has been the case and I am so grateful to everyone who has been so kind to me.

eye 2 eye Walk March 2018
eye 2 eye Walk March 2018

For my 33rd birthday, my husband took me to lake Garda. We decided in 2018 we would see more beautiful places and my gosh, it was one of the most beautiful places I have been to and will stay in my memories forever.

Beautiful Lake Garda for my birthday
Lake Garda for my Birthday – 2018

In August I didn’t let my anxiety get the better of me and I went on my local radio to talk about Stargardts and how it affects me. I have to say I was so proud of myself for this. It may come easy to some but speaking like this live on air was one of the most terrifying things I have ever done, but I’m so glad I did it and raised more awareness. I was on such a high after the radio interview, I decided to start up a blog and my website katiesvision.co.uk was born.

At the end of August my husband took me to see Britney Spears who I have wanted to see in concert for years (she didn’t disappoint) and we went to beautiful Croatia with my mum and step dad too and had a great time, lots of laughs and pretty scenery. Another gorgeous place ticked off and more visual memories made.

Happy face time, me smiling going to see Britney Spears.
Britney Concert Day 🙂 – August 2018

I decided to start up a U.K. based support group in September for others diagnosed with Stargardts and juvenile vision loss. I decided on this as I felt so alone when I was diagnosed, I didn’t want anyone else to feel the same. I remember the first thing I did when I was told I had Stargardts was look for a support group on Facebook.

I found some but a lot were American based, so I decided it would be beneficial to have a U.K. one. I hope people who have joined have found it as useful as I have and it’s nice to know there are others out there, although I wish none of us had this.

In the October half term, my husband booked a surprise trip to Brixham for all of us which was a much-needed break and as pretty and quaint as I hoped it would be. We had a gorgeous apartment overlooking the sea and did ok with the weather!

Brixham – October 2018

Throughout the year I did a newspaper article on my support group and an article for enable magazine on my condition and helped the macular society bring more awareness to younger people with vision loss. We also had lots of lovely days out to the beach, London and got a National trust card.

Reading back on how my 2018 was, makes me feel a little emotional. It also wasn’t without its down moments. It showed me who I can rely on and who truly cares about me. I now know who is there for me and who really isn’t. I know the people who tire of me discussing Stargardts and I can see in people’s faces who just want to keep me motivated and strong. Some people tried to bring me down in 2018 at the lowest point of my life, but I carried on regardless. The thing with vision loss is, unless you have been diagnosed with it or are living it, you can’t ever truly understand how devastating and life changing it is. Some people can’t seem to understand that one minute I was ok and the next I was going blind. That’s ok, I can only help raise awareness, but I can’t eradicate ignorance as much as I would like to.

Me and my dog, happy and smiling.
Me and my Puppy

I don’t make New Year’s resolutions, I never have done, but I hope 2019 is as fulfilling as 2018 was for me. I am so grateful to all the people that lifted me out of the darkness and told me I will be ok, supported me and told me to keep going, and gave me the strength to do that, I can’t thank you all enough. The one thing I do know for 2019, is that I will be putting the same amount of effort and energy into what people put into me. I don’t have time to waste on negative energy and I will carry on raising awareness for Stargardts and vision loss until the day I am told there is a cure.

Happy new year everyone ♥️🎉 thank you for following my blog and look forward to sharing more posts with you next year xx

Christmas 2018
Christmas 2018

Lifestyle Vision

Christmas Memories

December 18, 2018
Thomas Land Pic

I have to be honest and say, I adore Christmas time, December is my favourite month of the year. Last Christmas I felt like I wasted the month by being very disorganised and dwelling on things too much and making myself stressed by trying too much to please others. This year I have already wrapped most of the gifts I have bought people and have decided that it will just be the 3 of us eating at home on Christmas Day this year. To save any hassle, I have ordered a lazy Christmas dinner that is all prepped and veg chopped ready to pick up from the supermarket just before Christmas Day, so I can spend as much time with Harvey as possible and just shove it all in the oven for an hour with minimal fuss. If it isn’t very nice, then I know my mum’s dinner on Boxing Day will make up for it! 

Inside National Trust House

We have done quite a lot this month to get in the Christmas spirit. We went to a national trust Christmas market and looked round the Manor House that was all decorated with beautiful Christmas trees and pretty lights. They also had a light trail that was gorgeous and we all really enjoyed it. We also took Harvey to Thomas Land over the weekend as a pre Christmas surprise and he was so excited when we got there, it was very magical and Monday me and my mum treated ourselves to a posh afternoon tea at a luxury hotel in the countryside, just because we wanted to, which was also very festive! 

National Trust Light Show
National Trust Light Show

I have tried to focus on the now this Christmas, but at times it can be very difficult. It saddens me so much when the lights don’t shine as brightly anymore on my tree, or trying to film my little boy on a ride at Thomas land,  I couldn’t make out easily which child he was and ended up filming someone else and getting fed up with a Christmas film because it’s just too tiring to focus on the TV for so long these days. Inside my heart breaks and for a split second I feel anger rise up inside me and I think why has this had to happened to me, but I know deep down it’s not a healthy way to live. The fact of the matter is, it has happened to me, I am losing my central vision and I can’t do anything about it. Instead of the negative response I have been struggling with, I have been trying to tell myself, why shouldn’t this of happened to me. Yes, it is sad, but my life is continuing despite my eyes failing me. If my eyes have declined, I have adjusted and I will continue to adjust the more they decline and my life can be as amazing or as sad as I let it, I am controlling it, not my Stargardts. 

Greg and I Getting Festive
Greg and I Getting Festive

So this Christmas I will make as many visual memories as I can, instead of feeling sad and dwelling on what may be in the coming years, I will live for the moment and I will watch my little boy race down the stairs on Christmas morning full of excitement and anticipation with this little hair standing on end, unwrapping his presents Christmas morning with joy in his eyes and I will sit with my family and eat our Christmas dinner whilst talking and enjoying each other company and I will embrace what I have now and not what I have lost, because I know deep down, my life could be worse and I am lucky to be spending the holidays with people who truly love me and who have got me through the hard times. I don’t want to look back at my life when my eyes are a lot worse and wish I had made the most of what I had, I want to do that now and I want to do it well ♥️ hope everyone has a lovely Christmas xx

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