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 bed.
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 ♥️.
17 comments
Amazing article Katie,
You have hit the nail on the head with so many points. I have been diagnosed with stargardts for 6 years now (I was 29 when it was discovered) and the impact it can have on your life is huge.
I still have hope that stem cell treatment will help us out in the near future
Well done again.
Mike
Thank you for reading 😊 I hope stem cells help us in the future too 🤞
Katie
Very well written . Even though our eye disease is different , sight loss and blindness is the same . The same fears and anxieties.
Wishing you good eye days .
Never forget how far you’ve come and it’s amazing you are a fabulous Mum too.
Take care
Niki xxxx 🌹❤
Thank you Niki ❤️ although I wish neither of us had these conditions, I am grateful to have found someone who truly understands. Thank you for your kind words as always xx
Hey, Katie. As a fellow Stargardtian I agree this is mentally exhausting and at times overwhelming. Thank you for putting it in words, and your picture is very helpful for others to get an idea of what you see. This is very helpful. Let’s all join together to support each other through this. Your children will grow up with a compassion for people who struggle. . You are still the best mom for them. Thanks for the vulnerable share.
Hi Jennifer, thank you for reading and I’m glad my post was helpful. I believe my children are and will be a lot more empathetic throughout life because of my condition so that is a big positive for me. Thank you for your kind words xx
You have great explanations, and the pictures are quite authentic.
Thank you George 🥰💙
Katie, thank you for sharing your experience. I am so very hopeful that a major breakthrough will happen soon, and I am confident that it will for you and my own beautiful Katie who is 18.
Hopefully one day stem cells will help us and I’m sorry your daughter has this too ❤️ thank you for reading xx
Hi Katie, are you aware of a study by a company called Alkeus Pharmaceuticals? They are working on a drug that is moving through the FDA here in America – we are keeping a close eye on that trial.
Wow, you are such a beautiful and strong person. I had no idea that this existed. What you’re doing, raising awareness for this, is great. More people need to know about it. Excellent post, thank you so much for being brave enough to share.
Hi Zoey, thank you for reading and I appreciate your kind words and encouragement. I’m also happy another person in the world has now heard of stargardts 🥰
Dear Katie
You have the most beautiful eyes😍 thank you for taking the time to blog about your eye disease, you are a very beautiful brave woman. The more the public get read personal stories, the more it will being about positive advancement for understanding, research and policy.
My 21yr old grandson also has incurable optic nerve neuropathy, acquired from a car crash 2 yrs ago.
I also hope and pray stem cell treatment can bring healing.
Warmest regards
Joanne Jacobs 🇿🇦
Hi Joanne, thank you so much for reading and for your kind words ❤️ I’m also sorry to hear about your grandson. I keep my fingers crossed every day that stem cell treatment will help us in the future xx
I’ve never heard of this disease before but it sounds really tough. Knowing that you’ll go blind is horrible! I think it’s amazing that you’re raising awareness about this disease and it’s so brave that you’re sharing your story. I really hope for you, and all the people with this disease, that there will be a breakthrough soon when it comes to treatment!
xoxo Simone | https://beautymone.com
Thank you so much for your kind words and for reading xx