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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 ♥️.

Travel Vision

Holiday Vision

September 9, 2019

Our holiday has sadly come to an end, but we have made some wonderful memories 💙.

I don’t know if it’s because I wasn’t at home with my usual routine and things I am used to every day, but I really did notice my vision loss whilst I was away. Watching seagulls fly in and out of my blind spots, trying to look for the seal whilst everyone else was already watching him bob around the harbour, trying to work out which was my husband and Harvey body boarding only being able to go by their movements and mannerisms that I am used to, to pick them out of the crowd, struggling to see creatures in the rock pools, just lots of little things like this. The one thing that really bothered me was when Greg was poorly and Harvey, Sawyer and I went out to the beach on our own in the evenings. It took me a long time to focus on anything and I could barely make out the steps down to the beach which frightened me a bit as they were extremely steep. I felt a lack of confidence in myself, but I didn’t let it show to Harvey and I carried on making memories regardless. 

My Son By The Sea with arm in the air
My Son By The Sea

This holiday has made me realise though how visual life is. A lot of our holiday chat was things we could see or what we had seen, and this has panicked me a lot. It has made me think about what I will miss out on when my vision gets worse and will I get left behind? Will people remember to talk to me about other things or have enough patience to explain things in more detail? Whatever happens in the future, I just want people to know that this world is intimidating when your vision starts to fade and that all of us with vision loss are just trying our best to carry on living but may just need a little more patience and a little bit more of your time to help us enjoy this life with you ❤️.


May – Healthy Vision Month

May 8, 2019
Me with my makeup done for eye health month.

May is health vision month. A lot of people who know me and my incurable eye disease may wonder why I bother to promote eye health and urge people to go to the opticians for regular check-ups. The reason I do this is because about 75 to 80% of eye problems picked up by opticians are either curable or manageable with the correct and prompt treatment.

Snellen chart
Snellen Chart

Wet Age-related macular degeneration can be held off with regular injections to prevent vision loss over time. If glaucoma is discovered early, specific eye drops can help lower the eye pressure which in turn slows or prevents vision loss. Cataracts can be removed when vision becomes too blurry. Retinal detachment if caught in time can be reversed. A macular hole can often be repaired. Uveitis in a lot of cases can be controlled with steroids.. the list goes on. Unfortunately for me, I am just an extremely rare case where an optician’s appointment and subsequent hospital visits can’t help me, but they could for 80% of the rest of people with eye conditions. I never knew I was losing my eyesight to Stargardts disease, I hadn’t noticed my blind spots or blurring as it was just normal vision for me. Don’t leave an optician’s appointment until symptoms arise, as it may be too late then. People should be going regularly every two years to prevent any eye conditions from forming or progressing. Eye pressure can be very serious, leading to problems with your optic nerve with an increased risk of getting glaucoma, but there can be limited symptoms or symptoms that people may associate with a headache or migraine. It can only be measured by a professional who can then tell you whether your eye pressure is within normal range or not. There are several other conditions like this that may be silent and very little symptoms that you realise.

Me having my eyes checked.
Me having my eyes checked.

So many people don’t regard the opticians as necessary if they don’t feel anything is wrong, but our eyesight is so precious that nobody should be taking it for granted and should ensure that they have regular check-ups and ensure their children do too, eye conditions don’t just appear in adulthood and having regular eye checks by a professional is the only way to see right into the eye and know what your overall eye health is. 

It is important to keep up with regular eye glasses prescriptions and contact lenses for people who have correctable vision, so they maintain their optimum eye function and vision. It is also important to wear sunglasses outside to protect against UV rays, even when it is bright but cloudy, UV rays can still reach the eye.

I hope anyone reading this that hasn’t been to the opticians for a while or needs to book an appointment is reminded to, that’s all I ever want when I write these posts. If I could prevent my eyes from deteriorating, I would do it in a heartbeat 💜 .

Health and Beauty Lifestyle

When 3 become 4 💙♥️💙💙

February 4, 2019
It's a boy pregnancy reveal.

I finally feel brave enough to discuss my pregnancy now we are over half way and had our 20-week scan 💙! I feel I have been in hiding with it for the past few months, but this time round I have been so sick. Morning sickness wasn’t just in the morning and through the months of November and December was relentless and 24/7 of feeling sick and actually being sick to the point I was prescribed anti sickness tablets to get me through my worst days. But that’s all in the past now and am feeling great in the second trimester thankfully! 

When I was diagnosed with Stargardts in 2017, my hopes of having a sibling for Harvey were completely crushed. I had to wait several months to determine whether I had the dominant gene that would be passed to Harvey or any other children we may have, or the recessive gene that would stop at me. Thankfully I have the recessive gene, so Harvey and any other children we would have, stood a less than a 1% chance of having Stargardts too. Then there was the fact that with subsequent pregnancies, my vision may deteriorate, so this was something I had to really consider. Although the specialists at Moorfields reassured me that pregnancy shouldn’t have any affect on my Stargardts, I am aware that this hasn’t ever really been properly studied and talking to other people from the support groups made me realise that actually, pregnancy can possibly progress the vision loss. Some peoples will go back to normal after the birth as it is hormone related and some peoples won’t, so it was a big decision to make. 

Me at the weekend.

Looking at my life and what Stargardts has taught me, is to live for the now and don’t think too far ahead. There is no point in being scared of my vision progressing quicker now, as it may have anyway. The fact is, my vision isn’t too bad right now and I would have a lot to give another child and for me, I didn’t want Harvey to have all the worry of me and my eyesight by himself when he is older, that is something I seriously had to consider and think into the future about. He already worries if I lose my driving licence and he never passes his driving test so he can take me places and it breaks my heart that his head is full of things like that at such a young age. I’m hoping his new little sibling will be a welcome distraction from the sadness that we had before. 

A picture of a blue teddy bear.
Blue Teddy Bear

I have my check up at Moorfields in April, so I will know where my vision stands then and whether it is on the progression, but until then, I have a nursery to plan, little blue clothes to pick out, baby boy names to think of and lots of little boy toys to stock up on. Stargardts will have to take a back seat for now, it won’t be stealing this joy from me 😊💙.

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