1 Person in Every 8 to 10 Thousand has Stargardts Disease
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 […]
Internalised ableism within the community
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. 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 […]
Will glasses help?
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) […]
Invisible Disability Awareness
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 […]
JUDGEMENT
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. 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? […]
Macular Week 2020
This week is macular week. Nearly 1.5 million people in the UK alone are affected by macular disease, I am one of them. 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. 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 […]
A glimpse into chronic life, by COVID-19
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 […]
Behind The Smile
“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 […]
Low vision awareness month and Stargardts disease
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 […]
Remembering You
Yesterday I said goodbye to my Grampa George. It was honestly one of the hardest days of my life, but something I couldn’t avoid and just had to get through it. It was a lovely day as strange as that sounds, and he would have been proud of his send off. I would do anything to have just one more conversation with him 💙, but I know that this can’t and won’t happen. The last few years have taught me that life can change in an instant. Nothing is ever guaranteed, and we have to try and make the best of everyday. Some days are hard for many reasons, don’t get me wrong, but we need to try and accept the bad times so that we can keep on enjoying the good ones. My Grampa always used to say to me that life is so short and that his had passed in a flash and he said the reason for that was because he was always happy with what he had, he never felt the need to compare himself to others and what they had and I think that is the best way to live. My eye condition eats me up inside sometimes […]
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1 Person in Every 8 to 10 Thousand has Stargardts Disease
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 […]
Internalised ableism within the community
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. 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 […]
Will glasses help?
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) […]
Invisible Disability Awareness
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 […]
JUDGEMENT
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. 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? […]
Macular Week 2020
This week is macular week. Nearly 1.5 million people in the UK alone are affected by macular disease, I am one of them. 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. 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 […]
A glimpse into chronic life, by COVID-19
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 […]
Behind The Smile
“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 […]
Low vision awareness month and Stargardts disease
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 […]
Remembering You
Yesterday I said goodbye to my Grampa George. It was honestly one of the hardest days of my life, but something I couldn’t avoid and just had to get through it. It was a lovely day as strange as that sounds, and he would have been proud of his send off. I would do anything to have just one more conversation with him 💙, but I know that this can’t and won’t happen. The last few years have taught me that life can change in an instant. Nothing is ever guaranteed, and we have to try and make the best of everyday. Some days are hard for many reasons, don’t get me wrong, but we need to try and accept the bad times so that we can keep on enjoying the good ones. My Grampa always used to say to me that life is so short and that his had passed in a flash and he said the reason for that was because he was always happy with what he had, he never felt the need to compare himself to others and what they had and I think that is the best way to live. My eye condition eats me up inside sometimes […]
1 Person in Every 8 to 10 Thousand has Stargardts Disease
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 […]
Internalised ableism within the community
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. 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 […]
Will glasses help?
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) […]
Invisible Disability Awareness
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 […]
JUDGEMENT
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. 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? […]
Macular Week 2020
This week is macular week. Nearly 1.5 million people in the UK alone are affected by macular disease, I am one of them. 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. 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 […]
A glimpse into chronic life, by COVID-19
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 […]
Behind The Smile
“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 […]
Low vision awareness month and Stargardts disease
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 […]
Remembering You
Yesterday I said goodbye to my Grampa George. It was honestly one of the hardest days of my life, but something I couldn’t avoid and just had to get through it. It was a lovely day as strange as that sounds, and he would have been proud of his send off. I would do anything to have just one more conversation with him 💙, but I know that this can’t and won’t happen. The last few years have taught me that life can change in an instant. Nothing is ever guaranteed, and we have to try and make the best of everyday. Some days are hard for many reasons, don’t get me wrong, but we need to try and accept the bad times so that we can keep on enjoying the good ones. My Grampa always used to say to me that life is so short and that his had passed in a flash and he said the reason for that was because he was always happy with what he had, he never felt the need to compare himself to others and what they had and I think that is the best way to live. My eye condition eats me up inside sometimes […]
1 Person in Every 8 to 10 Thousand has Stargardts Disease
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 […]
Internalised ableism within the community
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. 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 […]
Will glasses help?
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) […]
