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 ♥️.
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).
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.
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.
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.
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.
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
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 ♥️.
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
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.
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 ♥️.
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
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
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.
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 ♥️.
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.
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 💙.
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
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.
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
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.
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.
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
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.
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.