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 ♥️.
“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.
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
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 ♥️.
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 ♥️.
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.
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.
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 ♥️.
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 ♥️.
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.
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. 😎💜