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About My Eyes

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About My Eyes

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When I first started school, kids used to ask me about my eyes.  I would point to each eye and say, "This is my fake eye, and this is my small eye with glaucoma."  These days, kids see that I wear glasses, but they don't usually ask questions. My parents tell people that I have small, underdeveloped eyes and that I have glaucoma. For this webpage, I asked my mom to tell me the details about what is different about my eyes. 
She told me that when I was born, my left eye had PHPV (Persistent Hyperplastic Primary Vitreous), a cataract, Anterior Segment Dysgenesis, and glaucoma.  Then when I was about 12 weeks old they found out I had a total retinal detachment.   My left eye is completely blind with no light perception. I wear a painted scleral shell (fake eye) over this eye, to make my face grow symmetrically, and also to make it look like a good eye. My right eye is my 'good eye', but it also has some mild PHPV, with Anterior Segment Dysgenesis.  I was born with a cataract in my right eye as well, and my eye is quite small compared to a normal eye.
My right eye also has nystagmus, so it looks like it is shaking, but I don't actually notice any shaking in my vision.   I developed glaucoma in this eye when I was three. My parents found a doctor who specializes in childhood glaucoma, because they wanted to give me my best chance for vision as I grew up.  I travel by plane about twice a year to see my awesome glaucoma specialist in North Carolina, and I also go to my local ophthalmologist for checkups quite frequently.
Glaucoma can't be cured.  The better it is managed, the longer I can keep my remaining sight. I had surgery to implant a glaucoma tube shunt in my eye when I was six years old, to reduce my eye pressure.  The shunt has a small tube going into my eye and a little reservoir tucked into the white part (sclera) of my eye.  It provides a way for fluid to leave my eye, because the natural drain in my eye is blocked.   I get Cosopt eye drops twice a day to decrease the amount of fluid my eye makes, which reduces my eye pressure. I also have two other drops to stop inflammation and scar tissue. My parents measure my eye pressure at home, without using eye drops to numb my eye, using a handheld instrument called an iCare tonometer.

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  • Home
  • Who We Are
    • About Sarah
    • Advisory Committee
  • What We Do
    • Icare Library
    • Gatherings
    • Family Support
    • Kids' Stories
  • Glaucoma
    • About Glaucoma
    • Resources
    • Faces of Glaucoma
  • Get Involved
    • Donate
    • Fundraise
  • Events
  • BLOG