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.
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!”
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.
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
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
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 ♥️.
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
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
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 ♥️.
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.
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. 😎💜
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.
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
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
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.
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.
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
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.
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.
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 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
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
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
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
