In my early 20's I was finally diagnosed with a rare form of glaucoma that actually had been affecting me my whole life and no one knew it. It is called Axenfeld Rieger Syndrome Glaucoma. Axenfeld Rieger Syndrome occurs in an estimate 1 in 200,000 people and the glaucoma portion develops in nearly half of those. Axenfeld Rieger Syndrome is actually a genetic mutation that can occur in a few different ways and result in facial abnormalities consisting of everything from wide spaced eyes, to a big forehead to a broad nose. For me the abnormalities were dental. In many cases of ARS, people are born with microdontia, which is a lack of teeth and small teeth.
As far back as I can remember people made fun of me for my mouth. They asked where my teeth were, why I looked weird when I sang, and why my teeth were so small. All I knew was that my teeth were healthy and I was missing a few so the tooth fairy brought me extra money when I lost one. Dentists don't normally have a background in genetics and why should they, they are there to make sure your mouth is clean and looks good.
It wasn't till my mid 20's that I did research into my type of glaucoma that I discovered this link. It was a light bulb turning on and for reasons unknown, very comforting to me to know that there was a reason for my dental issues. Everyone always asks me if my parents have the same issue, wouldn't they of known? ARS can be inherited and normally if you have it, you will carry it on to your children. It can however occur as a result of new mutations in genes. I don't have a clear answer if I inherited this from my father or if it was a new mutation, at this point it is not about pointing fingers its about living each day with the challenges and coming out of it with a smile.
The glaucoma has damaged my eyes very badly in recent years. In addition to glaucoma affecting my peripheral vision I recently was diagnosed with something called Ocular Histoplasmosis Syndrome which is similar to macular degeneration. This affects my retina and my central vision. Apparently you get this from breathing in a fungus found in soil in certain areas of the country. Again not sure how I obtained this but as a result I now receive injections in my eyes to stop excessive blood vessel growth and fluid build up in my eye that is a result of histoplasmosis. One sign for anyone who is thinking they may have this, is wavy vision. Look at a straight line, if it concaves or waves, you may have a retina issue such as this. OHS makes reading very difficult and paired with already low vision it can make working and simple tasks a challenge to say the least.
Now that you are informed of what is causing me to simply put, go blind, you can understand hopefully my journey and motives behind starting this blog. Most people get a tomorrow to put things off to do something. I'm counting down the days I have to see things and I have a lot I want to still see. Just as a kids list to Santa, it keeps growing so I'll probably never run out of things I want to see. I want to try and be informative about the things, places and events I want to see so that maybe some day you will want to see them to. Enjoy my Vision Bucket List and feel free to send me feedback and suggestions of new exciting sights.
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