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Stargardts

Vision

1 Person in Every 8 to 10 Thousand has Stargardts Disease

February 4, 2021
Me holding my board saying 1 - 8 to 10 thousand has stargardts disease

These stats above mean that my eye condition is rare, which is why I take up so much of my time talking about it. If you think I mention Stargardts too much, then great, my mission is working and people are listening. If nobody spoke about rare conditions, how would anyone ever find out about them? Just because Stargardts only affects a small amount of the population, it doesn’t mean it should be hidden away and people should just live with it without sharing the impact it has on our lives. 

I often wonder if this is why some people around me just aren’t interested in what I have to say because it doesn’t affect them, or they feel it will never affect them. Stargardts probably never will, but I would like to point out that currently over 1.5 million people have AMD in the UK which is age related central vision loss. This is not rare and as we are living longer, our eyes are becoming more affected by these conditions. I never ever thought I would ever get diagnosed with progressive sight loss, but here we are, and I will continue to talk and raise awareness about Stargardts for as long as I possibly can. People need to know the impact that sight loss has on people so that more research and future treatments can be put in place. Rare shouldn’t mean we are ignored, but if we are, we just need to shout a little bit louder ♥️.

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

Two Years

September 29, 2019
Me wearing makeup and with tear shape jewels under my eye.

Ironically to end eye health week, it is my 2-year anniversary of my official Stargardts diagnosis. 2 years ago, to the day I walked out of Moorfields Eye Hospital and my whole life had changed forever. Being told you are losing your eyesight at 32 is just something that unless you have been through it, you cannot comprehend. Some people may not understand me when I say this, but I felt in a way that I had been given a terminal diagnosis that day. Some people will read this and feel I am over reacting and I have no right to say this, but I’m afraid unless you have been told you are going blind, you will never understand how those words make you feel inside and the impact they have on your mental wellbeing. The fact that there is no cure for my condition, and I have to watch my eyesight fade in front of me, leaves one feeling completely helpless and in despair. 

Number Two Image
Number Two Image

Have things got easier for me in those two years? As much as I would like to say yes, the answer is no. I am learning to adapt to my changes and new blind spots, but because this disease is progressive and mine is currently progressing, time is not really the healer. As time goes on, my vision loss just gets worse. I don’t feel the despair I felt when I was first diagnosed and the feeling of sheer terror has thankfully passed, but I do still often feel scared. I often worry that I won’t be able to cope as my vision gets worse, but I know in my heart that I will have to. Lots of other people do with this and I have no other choice. 

A Year Changes You A Lot Image
A Year Changes You A Lot Image

After my diagnosis, so many people stopped asking me how I was. I notice that people who are physically ill are asked how they are, or people ask of them to see how they are and if they are getting better, but it’s a rarity for me to ever be asked ‘how are you?’ ‘Are you ok?’ I feel this may be because people are scared of the answer when it’s something that can’t be fixed, or they truly don’t realise the impact this has on someone. I have found the best people to talk to really are people going through the same thing, this has helped me no end. I am lucky that I have a lot of support from others I have met through Stargardts and am lucky to have the support of a few close family members and friends. 

In the two years that have passed, I am proud of the way I have handled this. They aren’t words I ever thought I would say coming from someone who usually puts their self-down and picks out all the negatives, but I am proud. I look back and the way this disease made me feel, I could have fallen into a pit of despair and some days I still feel like that when it has frustrated me so much, but I won’t let it beat me, my life is worth more than Stargardts. Stargardts can make life harder for me but it can’t take my life away from me and that’s what I need to remember. I am still me, I’m still Katie, Stargardts won’t change that ♥️.

Vision

Two Years Today

June 13, 2019

Two years ago today I went by myself, to the opticians, for what I thought was just a 2-yearly check-up. 10 minutes into my appointment, and Stargardts had changed my life forever. 

2 years on and although I have devastatingly already lost 2 lines of the eye chart in both eyes and there is deterioration on my scan pictures (although I am hoping with all I have that my eyes get slightly better once my baby is here) I am continuing to try and stay as positive as I can, but it’s not always easy. You can never get away from vision loss, you look through it all of the time and it is with you every waking minute of the day to remind you of what you have lost and what you are still to lose. Your eyes constantly have to adjust from one light setting to another, from one season to the next, no eye day is the same and this can be frustrating. 

Opticians Camera Work
Opticians Camera Work

People always say to me how well I have done to carry on, but there was no other option, this isn’t a fixable situation, so I just have the make the best of what I still have.

In 2 years I have had so much support from my close family and friends and also from the network I created for myself online to help me cope and I am extremely grateful to every one of those people who help lift me up when I feel down and help me to feel less alone with something so rare. There are also others who have just disregarded my Stargardts like it’s a twisted ankle and make me feel like I should just ‘get over it’, without any thought to how they may feel or cope being in my situation. People forget its progressive and realistically, by the time I am pushing 50, I probably won’t have much, if any central vision left and of course that could be even earlier as nobody knows the progression (unless a cure is found in that time 🤞🏼). Regardless of the latter, I am proud of how far I have come in the 2 years since my Stargardts was discovered and I am adamant I won’t let it stop me enjoying my life. I can’t deny that if I overthink my situation some days, fear grips me tightly and I will be honest and say I do get scared for my future and what I will miss, but none of us know what is around the corner and where we will be in ten year’s time, let alone tomorrow, so that’s why I try so hard to live for the now and for the moment, however big or small those moments might be and that is where Stargardts has changed my life for the better as I never did this before. If Stargardts has taught me anything, it’s that’s life is fragile, and things can change in a second and we should spend more time enjoying the small things and trying to let go of the things we can’t change and accepting them for what they are. 

Life Quote
Life Quote: “And yet, I suppose you mourn the loss or the death of what you thought your life was, even if you find your life is better after. You mourn the future that you thought you’d planned.” Lynn Redgrave.

I never dreamed this would be my future and if I could change it I would in a heartbeat, but I can’t, so I can’t waste all my time dwelling on it. My biggest regret is letting anxiety take my twenties and manipulate what I could and couldn’t enjoy and after finally overcoming it and feeling so much better, A few months later I then got told I had Stargardts, but I don’t want that to take my 30’s and the rest of my life because this one isn’t fixable and life is too precious to waste on something I can’t control. There will be times where sadness consumes me with every time my eyes deteriorate, but I will get through it with the help of everyone around me and hopefully each year that passes, this day will become easier and more of a distant memory ♥️.

Lifestyle Vision

36 Weeks Pregnant

May 24, 2019
Me at 36 weeks pregnant.

So tomorrow I will be 36 weeks pregnant. This pregnancy has really flown by and it’s scary to think I had Harvey at 38 weeks so may only have a couple of weeks left, eek! I have come out in a horrible cold the last couple of days and I’m struggling to sleep at night as much as I was because I can’t get comfy at this stage anymore. I have noticed a big change in my eyes the last couple of weeks which in the mornings, sometimes make me panic first thing. I can only describe my blind spots as like looking through honeycomb when I wake up and it lasts a good half an hour until my eyes have settled. This has also started to happen when I get tired later on in the afternoon too, but then doesn’t seem to last as long as in the morning.

Honey Comb Picture
Honey Comb Picture

My eyes also, in the last few days, seem to have excessive flashing especially in my right eye which just doesn’t settle at all and is really frustrating, I just hope if it is permanent, I adapt and get used to it. All in all, I can’t moan about this pregnancy as it has been relatively easy once the severe morning sickness eased at 15 weeks (and I haven’t even had heart burn this time!), but I am saddened at the deterioration of my eyes. I just hope they settle somewhat after I have had my baby boy, but if they don’t, I know he will have been worth it all.

I totally understand there are other mums who are dealing with a lot worse than I am and I am lucky that my Stargardts disease doesn’t cause any physical difficulties for me, but every week when I go to my pregnancy relaxation class, I have to admit I feel envious. I would love to be like the other mums who can just enjoy their baby fully and take in everything about them. I can’t deny I am sad that little bits of my baby boys face will be missing as I look at him and I will struggle to do up his little poppers on his baby grow or that by the time he is at school I really won’t have any clue which is my child. I always try not to think too far ahead as none of us know what is around the corner and it is best to just live for the now, but it does make my heart heavy when I think too much about my vision and what I will lose. All I know is that vision loss doesn’t stop you from being a good mum, it just changes the way you have to do things and hopefully, like Harvey has done, this little one will adapt with me on my vision loss journey 💙.

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.
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