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Living With Retinitis Pigmentosa

Being a young person with a visual impairment.

Being a young person with Retinitis Pigmentosa (RP) or any type of visual impairment can be very rough. Many things that others can do become chores for an individual with vision loss. As stated by my current RP and low vision specialists, Retinitis Pigmentosa can be described as a degenerative genetic condition in the eye in which eventually causes blindness. With any vision problem, more problems get created. People who have a severe case lose their individuality and that creates depression.

I’ve struggled with depression for most of my life. Not all of it is caused by my vision problem. Currently, I cannot drive due to my vision and I do not live in a big city where there is public transportation. This problem creates so much stress in my life as an individual. Not being able to drive is a big problem when trying to find a job as well as finding jobs that I can do with my disability. A few more things that come with RP are, night blindness, decreased depth perception, and very little to no peripheral vision. In everyday living there are many obstacles I must overcome such as, trying to not fall over something on the floor if I do not see it. My years of high school was hard for me, I would always get made fun of for tripping over things. I would get bullied, getting pushed into lockers and then smashed against them. People would call me names because they knew I had a visual impairment. I always dreaded school, so then eventually my mom pulled me out of public school and I went to a public online school.

Today I still struggle with depression and anxiety. There are things in life I want to do but because of my disability I will never get to do these things. I get down on myself about things that I cannot control sometimes. One day I was in the store with my mom and my boyfriend, we were waiting in line to pay for our items and I turned around and ran into a lady behind me. I immediately said I’m sorry and then walked away. I felt so horrible after that incident. My boyfriend walked over to me and gave me a hug, he could tell I was upset. He then told me that it's ok and that there is no way I would have seen her even if I did have all my vision. People do not understand that not all disabilities can be seen. Citizens all over the world struggle with disabilities every single day.

There are many physiatrists that I have been to, to try and cope with my depression. The truth is that going and talking about my problems did not help. They cannot relate to my condition because they do not struggle with it daily. It is very hard to talk to people about it when they do not understand.

Overall, there are multiple adaptations people must have when dealing with visual disabilities. Hopefully one day there is an actual cure for my impairment. There is research happening to find treatments for RP. Currently there is Genetic therapy and traditional Chinese medicine through herbal supplements and acupressure. Many of these current treatment options cost a very large amount of money that is not affordable. Traditional Chinese medicine in Vancouver Canada costs about 6,000 dollars just for treatment, not including a week stay in a hotel and airfare. While I am still young, I have been trying to experience my life as much as possible, just in case one day I do go completely blind. 

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