Vania

Hi, my name is Vania Dzib I’m from Los Angels, CA. At the very young of 10 years old, I was diagnosed with Systemic Lupus. It all began back in September 2004. I had just turned 10 years old at the end of September. At this time in my life, I was in 4th grade and my interest included playing with baby dolls, coloring, and playing tetherball. I played tetherball every recess and lunch break I got. So for my 10th birthday, I had asked my parents for my own tetherball I could have in the back yard. I was in love with the sport and loved having my own at home. Soon after I got my tetherball I started complaining to my mom that my hands were hurting me. At first, it was rare that my hands would hurt then it became a reoccurring thing.

My mother advised me to stop playing tetherball altogether awhile to allow my hands to rest as she thought the pain was due to me playing too much and hurting my hands. So I sadly gave up my favorite thing to do outside. But soon after I would still complaining about my hands hurting without playing tetherball. Then soon I started complaining that my back also was bothering me. So my mother took me to our local pediatrician. The doctor told my mom it was only “growing pain” and because I was in a development stage it was “normal” what I was going through. So we went on with our lives. My mom soon began to notice I would come home from school exhausted. She said I use to come home from school eat a snack and watch tv with my sister and play then do my homework. I began to come home and fall asleep for hours and not want to awake. Then my mom started realizing that my appetite had completely gone away. I would barely eat a sandwich for the entire day. My mom kept talking to the doctor and they just kept telling my mother that I’m growing. The last time she saw help from the pediatrician was when they told my mother that they found nothing wrong with me and that I was almost a teenager and most likely lying about what I’m going through. After this, my mom looked for another doctor's opinion. Another told my mom  “ your daughter is almost a preteen you know teenagers lie she’s most likely faking this.” But my mom knew I wasn’t faking this, this wasn’t her daughter at all. Then my mother had found a doctor who specializes in the elderly. This doctor had heard about my story and agreed to meet me and help us out. he asked my mother some questions, asked about past effects that I’ve happened to her daughter. After this appointment, he gathered his paperwork and told my mother she has Lupus. My mother had no idea what this was but she was happy somebody believed her and expected the doctor to just quickly prescribe some medicine and it would be over. The doctor explained it is not that simple, and that actually she needed to take her daughter to Children’s Hospital right away, I was in critical condition that day my mom picked up a few things and we drove to Children’s Hospital of Los Angeles. once admitted to the hospital I began to get IV fluids and medicine into my system to start treating my symptoms. The doctors said my kidneys were almost failing I had a fever of 102. The doctor said I was very dehydrated and had lost a lot of weight because my bones were very weak.  

 

After about a week of staying in the hospital, the doctors were very happy with my results I was trying to get stronger and I was responding to Madison very well. My parents were signing papers on medicine and getting ready to go home. The last night before we were set and pack to go home I had a traumatic seizure, this seizure left me in a coma for a week. Doctors explained that lupus had gone aggravated and attacked my brain causing the seizure. Once I awoke from the coma the real struggle began. I looked over to the side of my bed and there was this woman sitting there, I did not know who this woman was or where I was. This woman was my mother. This traumatic seizure wiped my memory completely. At 10 years old I had the brain of a newborn. I had to re-learn everything how to talk walk who was who in my family and what my own name was. I ended up staying two months in the hospital recovering. At this point, doctors knew it was most definitely Systemic Lupus. After two months at the children’s Hospital of Los Angeles, I was able to go back home. For a while, I did homestudy from home but I was able to return to school a few months later and finish fourth grade at school. It was very hard to keep up with kids my age but I did it and I even graduated from elementary school. From then on my lupus got even better and I was able to be in remission for many years. I finished middle school and went on to high school. During my senior year of high school, I had noticed I would get locked up fingers at times. At first, it was one finger once in a while. But it was rare to ever happen. Then it became more often and then it became my whole hand would get locked up. At first, I thought it was trigger finger but I read into it and trigger finger does not consist of your entire hand. So I had to seek help from a doctor that specializes with hands at Children’s Hospital. I ended up getting diagnosed with flexor synovators at the age of 17. Basically, I had inflammation in my tendons not allowing my joints to flex in my hands to open and close properly. I tried injections to try to stop the inflammation but soon after it stopped working. So the doctor said I had to get the surgery done and that recovery would take much longer. I had a meeting with my high school teachers and they informed me after going through his surgery and recovery I would miss a lot of school and probably not graduate with my class. I was very upset and frustrated that I worked so hard and I wasn’t going to be able to graduate with my friends after all this time. Once my surgery was scheduled for my hands I had a teacher come to my house and I would verbally tell her my answers for my schoolwork since I couldn’t physically write at the time. After two weeks of taking off for each hand, I returned back to school even as hard as it was I was determined to graduate and get my diploma on time. On June 2013 I graduated from Monrovia high school with a 3.0 GPA. 

Now, as a 25-year-old young woman I’ve been living with lupus for 15 years it has taught me a lot. I’m a lot stronger than I thought I can be. I have started my own blog on Instagram to share my experience, my struggles, and spread awareness for this disease. I am a preschool teacher now and I love working with young children. I still struggle some days with pain, fatigue, and joint pain. But I take it a day at a time and do the best I can. I definitely don’t let Lupus stop me. Check out my lupus story on YouTube! 

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Age: 26 years old

Instagram: @lovely_lupus_life

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