- S
Hello, my name is Aliza and here's my story. I used to be a gym rat and a very active, outgoing person. I used to love running and long walks and was always in the gym. I loved the gym so much I got a job there. One day, I started feeling really sick and thought that maybe I overworked myself, so I stayed home. I went to work the next day and all of a sudden, I was blind. It was really scary, but I got my vision back within a few hours. I didn't know what to do, so I called my mom. I got an appointment with an optometrist and a neurologist. They informed me I had ocular migraines and that the pressure in my eyes was extremely high. I have to be on multiple glaucoma meds and need surgeries and medication to treat it. I still go blind to this day, and my migraines even mimic strokes where I can't speak or see. I'm 23 and never allowed to get my license. I thought that was it, that it was just migraines and that with time it would get better. What I didn't know is it was just an underlying side effect of my actual chronic disease. I still wasn't feeling well and decided I needed to get blood work done. They did every blood work panel they could do and sent me to a rheumatologist, where he informed me I have a rare disease and would need infusions and chemo injections. I have GPA vasculitis disease. It causes me lots of inflammation in my body and excruciating pain. I'm in and out of hospitals every 2 weeks, and this disease caused me muffled hearing, scarring in my ears, and patches all over my body that burn and itch badly. It causes so much inflammation that at times I can't even swallow yogurt without it hurting or even choking. It has taken most of my mobility, and I'm mainly wheelchair-bound and no longer able to work. I've had multiple doctors give up on me and say my case is too complicated.
I need to be sent to Albuquerque, New Mexico for treatments that would make me pain-free for 9 months and to UCLA so that they can do tests on me and do T-cell therapy where I would be admitted to the hospital. I've had multiple doctors tell me that this disease would be easier on me and that they would be able to admit me to the hospital, but unfortunately, I'm deathly allergic to all steroids. I go into anaphylaxis every single time, or my body goes completely paralyzed. So, unfortunately, I have to go all the way to UCLA to see different specialists and to see if they can even help me. But unfortunately, my car has been trying to break down on us; it will not make it to UCLA.
I just need help getting a car to be able to get the treatments that I need with doctor's appointments weekly and multiple more surgeries to come. I am asking for anybody's help, please. I just want to make it to UCLA so that if I can finally go into remission, I can start living my life again as a normal 23-year-old, not having to wonder if an organ is going to shut down from inflammation or having to see the inside of an infusion center. Thank you so much for listening to my story





