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.