Angela Fernandez
Los Angeles, California (United States)
ANGELA FERNANDEZ
Scleroderma Stories Issue 2
Please introduce yourself
My name is Angela Fernandez. I am 11 years old, and I am from Los Angeles, California. I like to paint or color because it helps me get rid of stress. My dream is to have a big house, make an art gallery, and have a big kitchen in my house to bake. My goal is to have a good job that can help me pay for my treatments and my medicines.
When were you diagnosed with systemic scleroderma? What led to this diagnosis?
I was diagnosed with systemic scleroderma in September of 2016, although I believe I have had scleroderma since I was 5 years old. I believe this because of physical changes I have noticed and seen throughout my photographs.
Everything began in the spring, when I noticed a small but deep hole on my elbow that was at some point just a scratch or small lesion. The lesion was not healing whatsoever, but I did not feel any symptom of infection. But, obviously, it became worrisome. Furthermore, I began losing my appetite, and I did not even want to drink water anymore. As a result, I began feeling constant and chronic fatigue. I would sleep a lot and would wake up late into the day. Whenever I went in the car, I would instantly fall asleep.
My doctor gave me a month to gain weight, but I never did, and I still had no appetite. My mother then took me to the pediatrician to get my elbow checked out, and it was there that the doctor noticed how skinny and underweight I was. My pediatrician asked me if I was worried about being more full, and I answered that I didn’t want to be fat, and thus my doctor thought that I had infant anorexia.
After the month, I visited my pediatrician once again, and it was then when she noticed something off with my nails and arms. She also noticed that my hands couldn’t touch my elbows. As a result, she decided to do blood work, and we received two possible diagnoses. One was Lupus and the other arthritis, so she referred me to a rheumatologist at the Los Angeles Children Hospital.
After many tests, questions, and evaluations I was diagnosed with systemic scleroderma. I was put into further tests, and I was then also diagnosed with esophageal dysmotility and Interstitial Lung Disease.
How has this affected you?
This has affected me in many ways, including movement in my fingers, difficulty with opening my mouth, fatigue, difficulty concentrating, and insomnia. I have been receiving infusions since 2016, which have been really difficult, especially due to the hardness of my skin. Doctors have a really hard time placing needles correctly, and over the years my veins have become thinner and thinner, and the pain is greater every time.
I have also left school due to bullying. Emotionally, it has been very difficult to accept my diagnosis because it meant I can’t play like I used to and like the rest of the kids my age. It has been three and a half years, and I’m still learning how to live with this phase of my life.
Although it hasn’t been very easy, every day I try my best and do what I can. I have met many wonderful and amazing people who support me to surpass this disease.
I am currently receiving physical therapy to regain the mobility of my hands and arms. I have 2 calcinosis in both elbows, one with another ulcer in my fingers that make my days painful. I struggle daily with my fatigue and my low school concentration. I cannot open my own bottle of water. Everyone thinks that I look good, but in reality it is very different.
What is the scariest or worst part of having scleroderma?
Having to go to the hospital and the studies on me, especially blood tests and esophagus studies, I think that’s the scariest. For a while, I was not gaining any weight, and my gastroenterologist suggested a feeding tube and explained how it would be, and it was difficult for me. I started taking smoothies with protein and gained a few pounds.
Have you met other people your age with scleroderma?
I have met girls from Mexico through the internet. I also attended the childhood scleroderma convention.
What advice would you give other children with scleroderma?
That we are not alone. That we have many people around us who love us, and that scleroderma attacks us all differently.
Science is advancing every day to help us find a cure.
That we are something unique in this life, and it makes us be better people and value what we have, even suffering many things.
God is always with us, and his timing is perfect. Even if we don’t see him, he is always with us.
