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All things about Vision, Eyes, Stargardts, Macular Dystrophies, Vision Loss…

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Behind The Smile

February 17, 2020
Smile

“It’s not always the tears that measure the pain. Sometimes it’s the smile we fake”.

Most people will have heard by now of the tragic death of Caroline Flack ♥️ the woman who seemed to have the perfect life and the brightest smile. We seem to assume that if someone appears happy on the surface and especially on social media, then all must be ok.

It’s so very easy to hide behind a smile, a smile is easy to fake. When people ask, “how are you”, the simplest reply is “ok thank you”. How many of us have done this, when inside we are really holding back the tears? Through my time of having severe anxiety and panic attacks in the past, I have felt that desperation and wondering of how I can go on when I was having several distressing panic attacks daily and then again when I was diagnosed with Stargardts. Without support, which thankfully I had, I can honestly see how things could get too much for someone to bear and how the darkness can take over your thoughts.

Be Kind Text Quote
Be Kind Text Quote

I don’t know what’s happened to society of late, but when someone in the public eye appears vulnerable or makes a mistake like the rest of us do every day, the British media and trolls seem to attack that Person relentlessly. People forget they are a real human being, who has feelings, hopes and dreams, and when someone is feeling vulnerable, those vicious words day in and day out can destroy any ounce of self-worth they ever had.

The sad fact is most of these trolls are brave because they sit behind a keyboard and I guarantee the majority would not say anything to that person they are hounding in real life. I am not a celebrity, but some of the things I have had said to me on social media about my vision loss, is awful, but luckily I am in a good place and I just let it go, but I think these people need to be held accountable for their actions.

The British media also need to take a long, hard look at the way they report and the whole innocent until proven guilty needs to be put into practice and details need to be kept private until someone is charged for their mistake.

My point of this post is just to remind people that kindness really is everything. If you have nothing nice to say, just say nothing at all. Spreading hate and sadness is such a waste of time and can have catastrophic consequences. If you are trolling people because you are unhappy in your own life, please seek help because this behaviour is destructive, and it costs lives. A reminder to everyone else is when you ask a friend how they are and they reply, “Ok thank you”, ask them again and see how they are truly feeling, you may be surprised at their answer ♥️.

For anyone who may need some support x

*Samaritans charity – https://www.samaritans.org

Mind – https://www.mind.org.uk

Anxiety U.K. – https://www.anxietyuk.org.uk

SANE – http://www.sane.org.uk

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 ♥️.

Lifestyle Publications Vision

Northamptonshire Food and Drink Awards 2019

November 12, 2019
A picture of me with my blu light blocker glasses on.

Purple Tuesday

With today being purple Tuesday, I thought it would be a good day to discuss what I have been invited to on Thursday evening, but first here is a bit about today 💜.

Purple Tuesday is a day that makes customer facing businesses more aware and is to inspire them to improve a disabled persons customer experience when shopping with them. By a company making just one positive change to their business for accessibility, it will create a wider audience and shows that they are an advocate for equality. Equality is so important so that everyone can feel accepted and catered for, so this leads me to the event I am attending Thursday. 

Purple Tuesday Logo
Purple Tuesday Logo

Northamptonshire Food and Drink Awards 2019

On Thursday, I have kindly been invited by NAB – my local sight loss support charity, to attend the Northamptonshire food and drinks awards ceremony, that will be taking place at the Royal and Derngate. This awards ceremony is to celebrate all that is great about local food and drink and recognising excellence within the culinary sector of Northamptonshire.

For the first time ever, NAB will be presenting the ‘Dining for all’ award and I will be with them to represent young people with vision loss in Northamptonshire. The ‘dining for all’ award will be presented to the venue from among the category finalists which excels in its service for those with sight and hearing difficulties. This award will enable the visually impaired, blind and deaf members of our society, to know exactly where they will be catered for when choosing to dine out. It’s for the eateries that went above and beyond to enable these people to have the best experience when choosing to eat out, an experience that should be as enjoyable as anybody else’s.

northamptonshire food and drink awards logo.
Northamptonshire Food and Drink Awards Logo

Things that were noted when deciding who should win this award were simple things like, is the menu available online to enable the visually impaired to browse and choose their meal beforehand using a screen reader? Staff explaining where the food is placed on their plate or where they’re drink is placed at the table? Staff asking how they can assist individuals with low vision or who are hard or hearing. Simple things that can make a big difference to that individuals dining experience.  

So, make sure to follow my stories on Instagram on Thursday night to find out who won this fantastic award and to find out who goes above and beyond, to make all of our dining experiences as stress free as possible. I’m really excited to be a part of this amazing evening and especially excited to find out who wins the ‘dining for all’ award. I look forward to sharing the results with you all soon! And don’t worry, if you aren’t on Instagram as I will be writing a follow up blog post all about my evening after the event for anyone who is interested ♥️.

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

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

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. 😎💜

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