Updated: Jul 15
This post is most likely going to be one of the hardest posts that I will write, this is the insight of what is going on with my vision and how I found out, and how it has affected not only me but my family as well. I am not going to filter my emotions nor will I sugar coat my feelings to save grace to the reader this is my journey of losing MY vision and here is part 1.
August 2020 I scheduled a regular eye exam with my optometrist as I noticed that my vision was changing and I was finding it much harder to focus on things and it seemed like I had these little dots that would randomly show up in my eyes at times, I wasn't sure what they were so I went to the trusted Dr. Google, and of course, it said that it could possibly be floaters (Spots in vision that look like black or gray specks or strings that drift across the eyes.) Not really thinking too much of it I brushed it off and waited on my appointment day. Everything was great the staff was beyond friendly and the Optometrist was just phenomenal. I paid extra for dilation and for specific images you know as a precaution. Once she started to look at my images her face changed and I heard the dreadful " humm" that is sure to make the deepest fear fall over you when any medical professional says that. She then asked me questions pertaining to my family history with eye conditions and then she said from the images it looked as if I had RP (Retinitis Pigmentosa-An eye disease in which the back wall of the eye (retina) is damaged. Retinitis pigmentosa is a rare, inherited degenerative eye disease that causes severe vision impairment. Symptoms often begin in childhood. They include decreased vision at night or in low light and loss of side vision (tunnel vision). While there's no cure for retinitis pigmentosa, medications can help treat complications of the disease.) Her concern was that even she was fairly sure it looked like RP, my images did not look like the classic signs of this eye disease. She asked if I knew of anyone with this condition and I said "Yes my father", I gave her a brief rundown on the history and that was that nothing more to it. She did ask me if she could send my images off to some of her colleagues for them to see if they have any ideas on the type of RP that I may have, of course, I agreed not thinking much more of it. so she sent the images off and for me at least I had new glasses coming and a sense of happiness that my vision would be restored. weeks later my glasses came in and as fast as I could I made my way to her office excited about these new glasses. I semi waited patiently as of course every customer in the store had a million questions and wanted to try on 50 frames only to go back and forth over the same 2 pairs for 45 mins just to walk out of there. Now my mother did teach me manners and to be nice to the elders but ya'll I was straight up ready to box this old lady with ALL of my energy, I mean I was two seconds from ramming into her cart and then telling her to "Step Outside."
Luckily fate stepped in and she left, JUST LIKE THAT. So now it was my turn, my turn to FINALLY get my new glasses, and when I put them on the gentleman told me to turn around and see if I could read anything and I was able to read a small sign, and that's when it hit me(grab a tissue) It was the moment I thought no one could fix, I had a vision and it was clear, I could see things much better and all I could do was cry, so I DID, and I cried, and I cried, I almost fell on the floor crying, clearly I was emotional. But when my Optometrist came out I was crying and thanking her and then I noticed she was getting those watermarks in her eyes, all I could say to her mother (who works for her daughter. CHECKMATE. That has to be sweet like " Ma if your late to work one more time you're out of here.") I just thanked her mom for raising a daughter that fights the norm and challenges her beliefs and to trust her gut, she was fighting for my vision just as hard as I was. So after using mostly all of the napkins I got myself together and made it back home. Time went on and she would email me to give me updates here and there and all in all, I was happy, I hadn't thought about the RP or anything like it, it was the last thing on my mind. She called me a few weeks later to schedule me to come back in to go over some things. This time my tears, would not be of joy but from what felt like my life was over. After consulting her colleagues she had come to the understanding that I indeed had a form of RP but they still were not clear on which type it was.
Why would the type of RP matter? Retinitis Pigmentosa has many different forms and they are set on the same persons in a family or group, there are more common types and then you have the less common types of genes of RP Now since there are multiple genes that when mutated can cause retinitis pigmentosa phenotype. Inheritance patterns of RP have been identified as autosomal dominant, autosomal recessive, X-linked, and maternally (mitochondrially) acquired, and are dependent on the specific RP gene mutations present in the parental generation. So this thing is kind of like a fungus (figuratively) speaking it can spread and mutate. There is a gene RPE65 that has a treatment that gives affected patients a corrected copy of that specific gene into their eyes.
But for me I wasn't that lucky, I was still in limbo about my eye health and so was my optometrist. The only other person I knew who had RP was my father and before he passed away he was completely blind. I remember asking her teary eyes and shaky hands " Was I going to turn out like my dad?" She hesitated to speak, it was as if she was choking back on her words like she had swallowed a pill that was now stuck, and then she mumbled "YES", at that moment everything went black, you had just helped to give me my sight and now you're saying I am going to lose this, what about my kids, what about my life, how in the hell was I supposed to take this information and move forward with my life, I was angry and I had a big chip on my shoulder. She asked if she could schedule me to see a retinal specialist for him to do genetic testing to see if MAYBE I was one of the lucky people that would have a mutated copy of my RPE65 gene. Now I had a glimmer of hope in this darkness, that there was a small chance I could be fixed and I held onto that hope for months waiting to see this retinal specialist. They had me come in and take my genetic test and then I had to wait months for the results. Then the day came my results were and I was scheduled for an appointment.
Part 2: The Appointment- Coming Soon