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An interview with Shahlaa, age 21, who has achromatopsia

Jane Olver: Shahlaa, you are 21. When did you first know that there was something not quite right with your eyes?
Shahlaa: Well, my parents knew instantly because my sister had had it previously. So they knew as soon as they saw the signs when I born, the squinting and just hiding from the light. They knew that I had the same condition. But for my sister, I think she may have been just under a year old or just over a year old when they noticed her squint and initially, they thought that it was just a cross eyed, but then the other signs appeared such as photophobia and the slight wobbling of her eyes.
Jane: When you say squint, is that one eye turning in or just trying to close the eyes up in the light.
Shahlaa: Both, being cross-eyed and also closing the eyes to avoid the light.
Jane: What is the name of the condition you have?
Shahlaa: It is called achromatopsia.
Jane: Achromatopsia! What does that mean?
Shahlaa: (Laughs…) I am not entirely sure. I just know that it is when …
Jane: What does it mean for you?
Shahlaa: Oh! For me.
Jane: Yes.
Shahlaa: Like medically?
Jane: Yes! How do think it affects your vision…. For instance, from the light?
Shahlaa: Oh! Well, obviously yes. There is photophobia, which is quite extreme and there is full-colour blindness and nystagmus, though the nystagmus has stabilised over the years. It is not as bad as it used to be and also I have got severe short-sightedness.
Jane: How severe is your short-sightedness?
Shahlaa: Extremely. Like I do not know exactly. When I was in school, I would not be able to read the board even if I was close up or just when it comes to reading small print even, it is quite difficult.
Jane: So you are wearing contact lenses now, are you? What do they do?
Shahlaa: Well! They just make my vision clearer.
Jane: How do they do that?
Shahlaa: I guess it is like wearing glasses.
Jane: Are they coloured contact lenses?
Shahlaa: No.
Jane: They are just ordinary?
Shahlaa: Yes. The ones I am wearing right now are clear, but I also have a tinted pair.
Jane: And how do the tinted pair help?
Shahlaa: The tinted contact lenses allowed me to go outside without having to wear any sunglasses at all.
Jane: Fantastic!
Shahlaa: It does the same thing, but it does not. The tinted contact lens help in a sense that it makes everything clearer to see, but when it comes to seeing in the distance and seeing things far away, it does not really help.
Jane: When you are outside, how is it? I noticed you came in on the Tube today. Is it difficult getting around London with your vision?
Shahla: Well! It is easy because the signage is very good in most places. If the signage is not good, say I am taking a train outside of London and I need to see the board, I will just take a picture of the board with the writing on it and then zoom in and look at the picture on my phone.
Jane: That’s brilliant!
Shahlaa: I have learned to adapt. What is difficult?…. I don’t know. I think because I am so used to it all I do not find it difficult.
Jane: So it is normal for you?
Shahlaa: Well….if it is difficult, it does not really affect me.
Jane: What other ways do you adapt to your vision compared to other people?
Shahlaa: Well…. In terms of colour, I just generally use association to tell colours. So I associate the depth and the texture of a colour to identify it. I know if it bright, it is like red or yellow.… and then if something is too small, then I will take a picture of it and I will zoom in to have a good look. Or if I miss someone and they are pointing at something, say at university, I will just say that I cannot see it.
Jane: So the most amazing thing is that you function completely normally and you get around London. You are currently doing a holiday job. You are at university. What adaptations do you have to make at the university to see well?
Shahlaa: Well, they are quite accommodating in the sense that generally everyone has access to the lectures beforehand and then if it ever an issue, which means having to see the slideshow on the board, then I ask them to send it to me, but usually it is there already and I can access it on my personal computer or whatever before the actual lecture.
Jane: And then with all the computers, you are very good at magnifying the image on the screen.
Shahlaa: Yes, I know… and when it comes to exams, you can apply for special circumstances. So I can apply to have my exam papers sent enlarged or anything like that. I used to take extra time, but I do not need it anymore. I do not feel it’s fair and also I do not really need it.
Jane: And you are going to be an international relations business person?
Shahlaa: Yeah! Hopefully.
Jane: Fantastic.
Shahlaa: Yeah!
Jane: One more thing about colours. I know you actually paint and draw and you use colours. Tell me about that?
Shahlaa: I actually mostly use black and white, but if I do use colour, I tend to use one colour and then use different shades of that colour, so if I use blue, then I will dilute it more to make it lighter… you know.
Jane: Great! Thank you very much Shahlaa for talking to me for this blog. I wish you all the best for your third year at university in International Relations and Business. Thank you so much for explaining to me what it is like having achromatopsia.
Photo Credit: Matthew G


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