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 a difficult post to write, but one I feel needs addressing. I often don’t feel like I fit in to the community that I’m meant to be a part of. I don’t use a cane or have a guide dog and it has also been suggested that I’m lucky I’m only losing my central vision. I also feel I’m often invalidated because I got my sight loss later in life and that I have been able to do certain things that others were not. Ableism is always spoken about from people who aren’t in the disabled community, but internalised ableism can happen within the community too and I often find this harder to swallow.
Me holding a board saying Internalised Ableism Exists.
It doesn’t matter that my journey through sight loss has been different to someone else’s, or that I have been able to do things someone else hasn’t, like drive a car. This doesn’t take away my experience and what I am going through and it also shouldn’t make others feel like I can’t tell my story. Sight loss is not a competition and it saddens me that acceptance is sometimes based on the sight you have and not the journey you are going on. I just want people to know that it doesn’t matter when your sight loss journey started, how quickly your sight loss progressed, what visual or mobility aids you use or what you can see, your journey is your journey and it is as valid and real as anyone else’s ♥️. Thank you to everyone who supports my journey, I would be lost without you xx
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.
I have an invisible disability called stargardts. This doesn’t mean I see the same way that other people with stargardts see or the same way I used to see. Stargardts is a progressive disease that affects the central vision and everyone with it is at different stages of their vision loss journey. I don’t need a cane or a guide dog, but it doesn’t mean I don’t need visual aids or support or that I don’t struggle with things that others who are fully sighted do so easily.
This picture was taken before a meal out with my husband. As my sight loss is completely invisible to others. what this picture doesn’t show is how many lights I had to use just to see my face and having to hold a magnified mirror an inch away from me to do my make up and how many times I had to re do my eyeliner. This picture doesn’t show the anxiety I felt in the car at night as my husband drove us because I can no longer see in front of me in the dark. It doesn’t show my husband reading out the menu at the restaurant because I couldn’t see the text or my husband leading me back to the car because the change in light as we left stopped me from being able to see the car across the car park.
I often find it so tiring having an invisible disability that others can’t see. The impact that it has on a daily basis is massive, yet nobody can tell. I have people surprised I don’t wave back to them across the road or see their phone when they hold it up for me to look at something on it… the list is endless. People just take it upon themselves to assume I am being rude because I don’t look like I have a disability, even people who are aware of it.
In 2017 I was diagnosed with progressive sight loss and progressive is the important word. My vision has declined since then and may keep declining for the rest of my life until I have no more central vision left. It doesn’t matter what I could see in 2017 or how many times I waved at someone across the road or laughed at something that was shown to me on someone’s phone, I may not be able to do those things now. When my sight loss was found, it was because it was no longer stable. Please be mindful that although some people’s disability is invisible to you, it isn’t invisible to us and it doesn’t just get forgotten as the years go by since our diagnosis.
Please also remember that although we don’t expect you to fully understand our situation, we don’t expect ignorance either and being mindful of someone’s situation if you are aware of it, makes a big difference. Don’t judge a book by it’s cover and don’t expect all disabilities to be obvious ♥️
I can’t believe this one is going to be 1 this weekend. I know everyone says the same thing, but I honestly don’t know where that year has gone. Sawyer is the sweetest, happiest baby and has bought me so much joy in the midst of my despair over my Stargardts diagnosis.
Me and Sawyer Smiling
I got told by another mum this past week, that she saw absolutely no logic in me having another child knowing that I have a genetic, progressive eye condition and she just couldn’t understand why I would do this to a child. There is SO much wrong with a comment like this and people need to realise just how ableist it is. People who don’t live your life, have no place to pass judgement on the decisions you make. My eye condition has a less than 1% chance of being passed to my children and even if that chance was higher, does someone who has vision loss, not have the right to be a parent? Do others see a child with vision loss as less worthy than a fully sighted child? Should I not have been born had my parents known I would have Stargardts and lose my eyesight?
When a person makes a comment like this, they are only thinking from their own point of view and how they would cope. The fact is, people with vision loss and especially those who lose their eyesight at a young age, go on to achieve the same as a fully sighted child. People push out their own fears without thinking about how they may affect the recipient. The truth is, I’m as worthy to be a mum as anyone else and any child with a genetic condition is as worthy of life as any child without. Please everyone, think before you speak, you never know how powerful your words can be to someone.
This week is macular week. Nearly 1.5 million people in the UK alone are affected by macular disease, I am one of them.
Hows your macula?
Stargardts disease, the condition I have is genetic. I have a fault in my genes that prevents me from being able to process vitamin A and it is this that causes the damage to my macular. Although my type of macular disease is rare, 1 in 10 people reading this, will be diagnosed with macular degeneration by the time they are 65. Macular disease and Age-related macular degeneration cause a complete loss of central vision over time and this loss of central vision can make life very difficult. Our central vision is our fine detail vision, our reading and writing vision, our vision to recognise loved ones and children, to drive, cook and watch tv. These are just some of the things that our central vision is needed for.
Me with my hair and makeup done and eyes closed.
Imagine not being able to see anything directly in front of you. You can’t look around the blind spot that macular degeneration causes, or to the side; above or below it because it moves with your eyes. Living with a progressive eye condition can be very stressful and not knowing how quick your vision loss will progress can cause a lot of anxiety. People don’t really think about the impact of vision loss if it isn’t something that affects them and also because it’s not life threatening, eye charities sometimes get forgotten. Please consider eye charities in the future, as I can’t put into words the impact losing your eyesight can have on someone. I also urge everyone to protect their eyes to the absolute maximum. Wear your sunglasses outside, get regular check-ups at the opticians and be mindful of how you treat your eyes. Every day I wish that there was something to stop my progression, I want to see my boys grow up forever, I don’t want others to be in my situation if they don’t have to be ♥️.
COVID-19, I think everyone knows what
it is by now and is feeling the effects of this highly contagious virus. People
have lost holidays from the travel bans and others are worrying about loss of
earnings and having to self-isolate. Our freedom of movement is being
compromised and many aren’t dealing with the restrictions very easily.
Hopefully all of this will be over in a
few months, but imagine if this was actually your life day in day out, forever.
So many disabled people, people with
chronic illness and the blind to name just a couple, live in isolation and fear
every single day. Too poorly to get out of bed, some people with chronic
illness spend weeks isolated at home on their own, not able to socialise with
others, plan holidays and have a constant worry about a lack of income. People
diagnosed with vision loss don’t know if they will be out of a job once their
vision progresses and are often trapped at home due to not being able to drive
and having nobody around them to support them and take them shopping or to
appointments. Some days too anxious to leave their house in case they can’t
read the bus number or be able to navigate where they are going.
Now imagine you have booked your dream holiday and you are so excited, but the week before you have a big relapse and are too poorly to go, not the first time this has happened and you know there is very little point in re-booking. You then spend the next few weeks lying in bed in isolation, dreaming of the holiday that could have been and wishing so much that you were like everyone else and had all your freedom.
Beautiful Sea and Sandy Beach – A Dream Holiday Destination For Many
Imagine having to cancel going to your
best friend’s wedding because you feel too anxious to stand in a crowd of
people you don’t know for fear of feeing disorientated and unable to recognise
faces and worrying that you are going to make fool of yourself because your
vision has become so bad. Having to cancel a meal out with your partner because
there is no wheelchair access. the list goes on.
Luckily for the majority of people the situation
right now of cancelled plans will be temporary, but for many, it’s just what
they are used to.
Unfortunately, during this crisis, it’s the vulnerable yet again, that are suffering the most. This virus has bought out the selfish in some people who are stock piling extortionate amounts of essential items such as dried and tinned foods, toiletries, baby items and special dietary foods. People are taking up delivery slots that a lot of disabled people rely on to be able to eat weekly. Shopping in chaos when you are blind or have sensory issues can be distressing and some people are only thinking about themselves through all of this.
Support Wording
At this present moment, we need to pull
together, support the vulnerable and check up on those who may be finding this
harder than others. It will also be a time that may highlight severe anxiety in
some. Instead of being selfish we need to support each other, we need to be
kind and thoughtful. Lend a helping hand where it is needed, but also remember,
when this has all died down and everyone else carries on with the life that
they are used to, please don’t forget the vulnerable, it’s not just during this
time that they may need your support or help, they may suffer in silence more
than you have ever been aware of before ♥️.
