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My first post on my first ever blog is the email I sent to family and friends concerning my daughter (age 2), who has just received the news:
"I thought I'd send out an email about Emily's eyes to help everybody understand her condition better. I know it's a bit lengthy, but very interesting, I think!
As most of you know already, Emily has been diagnosed with Cone Dystrophy (aka Achromotopsia). This means that she has very few cones in her eyes, which normally help people with seeing in bright light. Her rods are working fine, so she can see in low light settings perfectly. Very bright lights result in complete blindness and possibly even a painful response in Emily's eyes.
Most complete achromats (those with zero cones in their eyes) see only black, white and countless shades of grey. The specialist said that Emily does have a few cones and she may be able to distinguish some color. She said that a bright red may show up as a faded mauve color, for instance. But the doctor's professional opinion was that most of her colors are greys. We can't be sure of the extent of Emilys color vision until she is old enough to explain and understand what she is seeing.
From what I've read, achromats sense no loss of color vision since they never saw any to begin with. Interestingly enough, most find that they enjoy their increased ability to see textures, depths and luminosities. They don't relate to things in but color they relate to how much light a thing gives off. I read that an achromat knitted a sweater with a beautiful design but we couldn't see it because the colors she used were so similar, but to her the different yarns gave off completely different amounts of light!
1 in 10,000 are carriers of a recessive gene and it takes 2 of these individuals to find each other and produce a child with Achromotopsia. The last known study shows that 1 in 33,000 (or 0.003%) Americans has Achromotopsia. The chances of our future children having the condition is 25%.
To date, there are not any cures for this condition, not that she would want one if there was! I've been reading a lot of first hand experiences from people who have the condition or people who live with those who do. Some neat things I learned:
As most of you know already, Emily has been diagnosed with Cone Dystrophy (aka Achromotopsia). This means that she has very few cones in her eyes, which normally help people with seeing in bright light. Her rods are working fine, so she can see in low light settings perfectly. Very bright lights result in complete blindness and possibly even a painful response in Emily's eyes.
Most complete achromats (those with zero cones in their eyes) see only black, white and countless shades of grey. The specialist said that Emily does have a few cones and she may be able to distinguish some color. She said that a bright red may show up as a faded mauve color, for instance. But the doctor's professional opinion was that most of her colors are greys. We can't be sure of the extent of Emilys color vision until she is old enough to explain and understand what she is seeing.
From what I've read, achromats sense no loss of color vision since they never saw any to begin with. Interestingly enough, most find that they enjoy their increased ability to see textures, depths and luminosities. They don't relate to things in but color they relate to how much light a thing gives off. I read that an achromat knitted a sweater with a beautiful design but we couldn't see it because the colors she used were so similar, but to her the different yarns gave off completely different amounts of light!
1 in 10,000 are carriers of a recessive gene and it takes 2 of these individuals to find each other and produce a child with Achromotopsia. The last known study shows that 1 in 33,000 (or 0.003%) Americans has Achromotopsia. The chances of our future children having the condition is 25%.
To date, there are not any cures for this condition, not that she would want one if there was! I've been reading a lot of first hand experiences from people who have the condition or people who live with those who do. Some neat things I learned:
- Universally, they can see better at night than color-vision people. Within the first ten minutes from going from brightness to darkness their abilities to see are far greater than you or I. I've read accounts of achromats being employed by the military for this ability. I have noticed this with Emily when entering a dark room at night too. She saw me when Rich didn't!
- Some achromats can see with their eyes closed! I thought this as especially cool. A mother told of how her 6 year old would watch tv with his eyes closed because it was more comfortable for him. A woman explained how in very bright light she could close her eyes and get an quick snapshot of what was in front of her.
And, I haven't even finished my research yet! All in all, Emily should be able to exist as normally as the rest of us with a few adjustments, such as dark glasses for certain situations. There is a new technology which developed a contact lens with a light filter which many achromats found extremely helpful in aiding their day-to-day lives. There is also an online network called the Achromotopsia Network http://www.achromat.org/ where I've found some great articles to help me understand it. Also there are some books, Island of the Colorblind and Night Vision which give accounts of the lives of achromats. I read the first and it was interesting to get an insider's view of what Emily can't explain to me herself yet."
