âI can see, but I canât. Itâs complicated.â
When I was 17, I was diagnosed with a rare genetic eye condition called, âRetinitis Pigmentosa.â Itâs a degenerative eye condition that leads to severe visual impairment and blindness. The condition is caused by a random gene mutation, and occurs in 1 in 4,000 people.
If youâre interested in learning more about RP, visit:
http://www.cnib.ca/en/your-eyes/eye-conditions/retinal-pigmentosa/Pages/default.aspx
I found out about my condition by accident. Some people may view this as a positive or a negative thing. At this point in my life, I wish I had found out later onâĻ
One day I decided that I should go for an eye exam. I already had prescription glasses, but they were getting too small for my face as Iâd gotten them when I was only 10. I hadn't been for an eye exam since, so I thought it might be time to check things out and see if my prescription had changed.
After the eye doctor did the standard eye test, he handed me my new prescription. Before I left the chair, he asked me whether Iâd noticed any other changes to my vision since my last eye test. I told him that Iâve always had trouble seeing in dim lighting or outside when itâs dark, but other than that, there was really nothing else I could think of. He put several drops in my eye and told me he was going to do one more quick exam and then I was free to leave. He proceeded to put three drops of yellow liquid into each eye and grabbed his microscope and light to have a look at my retinas.
After pulling away, he told me that there were some black pigmented veins on the inside of my eye, and that I should go see a retina specialist in Ottawa to make sure there was nothing more serious going on with me. He told me he would send it through email to the Eye Institute and that they would call me back with an appointment time.
On the day of my appointment, I was told to bring dark sunglasses and have someone drive me. When I arrived at the department inside the Ottawa Hospital, I noticed that I was the only person in the room under 35, and most of them were over 50. People went in and out of rooms wiping their eyes, being called here, there and everywhere. It was a little overwhelming. Overall, my whole exam was 4-5 hours. We were told that the hospital would call us when my results were examined by a specialist and an appointment time was available. About 6 weeks went by before they called. I went for an appointment 2 weeks later.
At my next appointment, I met my specialist for the first time. He explained to us how the test results showed abnormalities and that I had an eye condition called, âRetinitis Pigmentosa.â I was absolutely devastated when he explained the effects this would have on my vision. I was in denial for a while. I just couldnât believe that this was happening to me. I had no idea that people even went blind from anything other than a severe injury. And, I thought the majority of cases were people who were born blind.
I knew that this would not happen anytime soon, but it was now a possibility. I did a LOT of research in the weeks following my diagnosis. I tried my hardest to find positive information, success stories, treatment, a CURE! Nothing.
So far there is only one treatment for RP and itâs for people with a specific type. There is no cure, but research is booming right now. There are lots of clinical trials at the moment and things are looking really good for the RP community.
A lot of people ask me what I experience as someone who has RP. On a day to day basis, I experience floaters (loose vitreous), photo-phobia (extreme sensitivity to light), eye strain (lots of headaches and fatigue), flashing lights (when transitioning from light to dark situations), night-blindness (poor overall vision in dim lighting), photopsia (ophthalmologic hallucinations), and early ring scatoma (melting or pulsating areas in my vision). I would consider myself to be visually impaired, but I am still able to do most of the activities I enjoy.
Since getting diagnosed, Iâve come to terms with it a lot. Iâm not as depressed, I have a much more positive outlook on life, and Iâm finding ways to cope when I do have a bad day. I worry about things that anybody else would worry about if they were in my situation, but really, I try to keeo my mind off of it by keeping busy. Facebook is a great place to connect with other people who have RP; there are lots of groups where you can have conversations from people all over the world who are going through the same thing you are. Just the other I found a girl in Australia who had the same gene mutation as I do. Our type of RP affects only 1% of all RP cases. There are lots of resources for visually impaired people such as the CNIB and the Ottawa Eye Institute. Itâs really helped me out having outlets for my frustration.
I hope you liked this post. Iâd love to do more posts on RP, so if youâre interested, leave a comment. If you have any questions about RP, please PM me.
Love you babes.
Ciao
