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Zvezdinka (Star Girl) November 23, 2021 11:18 pm

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Achromatopsia
Zara is a 9-year-old girl from Bulgaria with achromatopsia - the identified gene is PDE6C. The first symptoms were noticed at the age of 10 months. It was the nystagmus, then the strong sensitivity to light, later the low vision. There was a lazy eye which developed into strabismus. She can't see colors, she sees shades of gray and black and white.To deal with her low vision, she uses mini telescopic glasses to help improve her vision from 20/200 to 20/50. These can be used for both far and near viewing.Due to light sensitivity - she needs her red tinted filter and almost always wears a hat outside.For colors we have purchased a special filter (not Enchroma) that helps for better contrast and this ultimately helps for better color differentiation. The filter showed about 60% improvement in color blindness tests. She also tried Colorlite lenses, but the result was not as good with them.Zara is doing great in school, loves to draw and make videos for her YouTube channel. Sometimes she may need help with some simple things, but overall - her life is as normal and as good as other children her age. The sky is not the limit if you believe in yourself and are motivated enough to achieve your goals00:00 About Zara02:27 Low vision04:18 Regular glasses and red filter05:24 Mini telescopic glasses06:54 Clip-on filter to aid color recognition09:13 Lenses09:33 Some other thoughts15:29 Zara paints16:58 Outro 18:50

Zara is a 9-year-old girl from Bulgaria with achromatopsia - the identified gene is PDE6C. The first symptoms were noticed at the age of 10 months. It was the nystagmus, then the strong sensitivity to light, later the low vision. There was a lazy eye which developed into strabismus. She doesn't see colors, she sees shades of gray and black and white.

To cope with her poor vision, she uses mini telescopic glasses to help improve her vision from 20/200 to 20/50. They can be used for both far and near viewing.

Due to light sensitivity - she needs her red tinted filter and almost always wears a hat out.

For the colours we have purchased a special filter (not Enchroma) which helps for better contrast and this ultimately helps for better colour differentiation. The filter showed about 60% improvement in color blindness tests. She also tried Colorlite lenses, but the result with them was not as good.

Zara is doing great in school, loves to draw and make videos for her YouTube channel. Sometimes she may need help with some simple things, but overall - her life is just as normal and as good as other kids her age. The sky is not the limit if you believe in yourself and are motivated enough to achieve your goals

00:00 For Zara
02:27 Low vision
04:18 Plain glasses and red filter
05:24 Mini telescopic glasses
06:54 Clip-on filter to aid colour recognition
09:13 Lentils
09:33 Some other thoughts
15:29 Zara draws
16:58 Outro

YouTube Video UExhXzh2SGpZYXM5aXJWN1lkclNjMU8xbDQ4cHhXX0hDVi41NkI0NEY2RDEwNTU3Q0M2

Achromatopsia - How does Zara see better despite low vision?

Zvezdinka (Star Girl) August 18, 2021 5:13 pm

Zara is a 10 years old child with #achromatopsia. She is from Sofia, Bulgaria. Achromatopsia is an eye condition with symptoms like pretty low vision (20/200 with normal glasses), severe light sensitivity, color blindness, strabismus. Although this channel has videos mainly in English - please, do subscribe, if you want to watch videos about achromatopsia and low vision :) We're doing them in English ;) This video is about Zara's NEW mini telescopic glasses. She's using the glasses made by prof. Ahmet Temel (https://minitelescopics.com) for over 4 years now, but her old pair is already small on her face and after 4 years of usage - it's proper to buy a new pair. The video is also to thank @Project Nightfall and their charity organization, because Zara was chosen for one of their Weekly $1000 in May 2022, and Project Nightfall Organization gave us $1000 to help us with the purchase of the glasses. All the ways we, her parents, try to help her with her condition we've described in this video:https://www.youtube.com/watch?v=8p7aySUa2hgThis is the video interview I watched years ago, where prof. Temel talks about his glasses:https://www.facebook.com/groups/22058157196/posts/10155310239087197/Chapters:00:00 Intro00:23 Zara's Condition01:38 How We Found the Glasses03:10 First Pair of the Glasses04:35 Project Nightfall Organization06:30 The frame09:57 The New Glasses 17:08

Zara is a 10 years old child with #achromatopsia. She is from Sofia, Bulgaria. Achromatopsia is an eye condition with symptoms like pretty low vision (20/200 with normal glasses), severe light sensitivity, color blindness, strabismus.
Although this channel has videos mainly in Bulgarian - please, do subscribe, if you want to watch videos about achromatopsia and low vision 🙂 We're doing them in English 😉

This video is about Zara's NEW mini telescopic glasses. She's using the glasses made by prof. Ahmet Temel (https://minitelescopics.com) for over 4 years now, but her old pair is already small on her face and after 4 years of use - it's proper to buy a new pair.
The video is also to thank @Project Nightfall and their charity organization, because Zara was chosen for one of their Weekly $1000 in May 2022, and Project Nightfall Organization gave us $1000 to help us with the purchase of the glasses. Thank you so much, guys!

All the ways we, her parents, try to help her with her condition we've described in this video:
https://www.youtube.com/watch?v=8p7aySUa2hg

This is the video interview I watched years ago, where prof. Temel talks about his glasses:
https://www.facebook.com/groups/22058157196/posts/10155310239087197/

Chapters:
00:00 Intro
00:23 Zara's Condition
01:38 How We Found the Glasses
03:10 First Pair of the Glasses
04:35 Project Nightfall Organization
06:30 The frame
09:57 The New Glasses

YouTube Video UExhXzh2SGpZYXM5aXJWN1lkclNjMU8xbDQ4cHhXX0hDVi4yODlGNEE0NkRGMEEzMEQy

My New Mini Telescopics - Life With Achromatopsia

Zvezdinka (Star Girl) August 18, 2022 10:42 am

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