Aviana T. - Diagnosed at age 7
My name is Aviana and I’m eight. When I was six years old, my life changed forever. At first the doctors thought I had a bad virus. After making sure I didn’t have cancer, I received a juvenile arthritis diagnosis. The more my mom let me meet other kids with arthritis the more I realized they did not have the same pain as me.
It wasn’t just my joints that hurt. My whole entire body hurt. I was always so tired, loud sounds or bright lights now gave me a headache. I couldn’t think some days, my fingers started turning white when I was cold or upset or excited - the doctors called it Raynaud’s. I lost a patch of my hair and spots on my skin turned white and would be painful. I started getting fevers, got a red lumpy rash from head to toe that hurt to touch and looked like mosquito bites, and my entire body would be stiff and in pain. My mom knew something was not right so two weeks after my seventh birthday she took me to another doctor in New York City.
It was my first time in NYC, and the doctor looked at all of my labs and symptoms and diagnosed me with lupus. Since my diagnosis I have had more MRIs, X-rays, ultrasounds, lab work, IVs and more medications then some adults have had their whole lives. I’ve seen every single specialty there is and four more rheumatologists, even one in Washington, DC. My doctor says I’m very rare. I have lupus overlap. It’s affecting my muscles now too. I’ve been hospitalized four times in the past year. It’s hard to explain to my friends and teachers or anyone who doesn’t know me what I feel because my disease is invisible. I hope bringing awareness will allow people to have more compassion and hopefully raise money for research to find people like me a cure.