As it is Glaucoma Awareness Month, I thought I would talk about my experiences as a person who was born with congenital glaucoma. When I was asked to write about my experiences, I was initially at a loss, as I have only ever known one world. As my condition is congenital, meaning I was born with it, I have never known a time when I was not affected, nor have I known anything different. Similarly, I do not know how to answer someone when they ask how much I can see: I have only ever known the sight I have, so having nothing to compare it to.
So, when writing this piece, I consulted my parents on what affects me, from the perspective of people who do not live with glaucoma.
Congenital glaucoma is the rarest for of glaucoma and it affects both of my eyes. The main effect of this is that I have no peripheral vision, which is the side-vision the eye sees when looking straight ahead. This means I have no access to what is coming at me from the side, which explains my life-long fear of bees and wasps. For example, if a wasp is buzzing around me, I will only notice it when it is either very close or directly in front of me. As I am blind in my left eye, this is made even worse. When it comes to snow, grass, and leaves, everything is the same level to me. I struggle to see steps, bumps, dips, puddles, and slopes in these conditions.
Unless they are clearly marked, stairs and down escalators are a huge struggle, and down escalators used to be one of my biggest fears when I was little. I still get cautious now, but I have learnt that the best way to cope is to find a banister, handrail, or anything to lean on or hold while I walk, allowing me to steady myself and focus while walking. All these examples are made even harder when walking in the dark, so I try to avoid walking at night as much as possible. I have to be extra careful when walking back from campus after a long day, carefully navigating my steps so I don’t trip.
Glaucoma is caused by fluid building up in the front of the eye, increasing the pressure on the eye. This is what causes the vision loss, but the pressure must be stabilized in order to prevent the sight loss from getting worse. To keep the pressure in my eyes stable, I need to put drops in both eyes twice a day. While this may sound tedious, it has become part of my morning and night routine, and I know that my drops are vital for keeping my pressure stable. While I am away at university, I have to make sure I have enough drops to keep my going for 6 weeks, which means I have to plan ahead and get organised with ordering my repeat prescription.
There is currently no way to reverse sight loss from glaucoma, but it can be treated. My glaucoma will be monitored for the rest of my life, and I will continue to have regular check-ups to ensure everything is in order. New research will develop, and it is posts like these that I hope will raise awareness for our glaucoma community.
