Diagnosed with Juvenile Rheumatoid Arthritis at 15 months old

 

Alexa Sutherland

Simple tasks that became impossible because of rheumatic disease:

  • Putting on shoes
  • Walking up the stairs to class
  • Cheerleading

Overview

Alexa Sutherland was 15-months old when she was officially diagnosed with juvenile idiopathic arthritis (also called juvenile rheumatoid arthritis or juvenile arthritis). Since then, the disease has intermittently prevented her from being a normal kid – attending school, playing with friends, cheerleading, and shopping at the mall. Despite her everyday struggles, Alexa has a glowing spirit and a positive outlook on life, with big hopes for the future.

Alexa’s Story: Living Big with Arthritis

Alexa took her first steps around the age of one. The soft pitter-patter of feet was a well-known sound in the Sutherland household, until the day Alexa suddenly couldn’t walk anymore. Almost overnight, her knees had begun to swell so badly that her mother rushed her to the emergency room. Shortly after the hospital visit, Alex was placed into leg braces and given the diagnosis of JIA. The sweet-faced baby girl was barely two years old, and already coping with a chronic disease. Fast forward twelve years and you find a vivacious teenager who loves to cheerlead, paint nails, and read books. Alexa also dreams of becoming an actress and advocating for patients with rheumatic diseases.

Growing up with a Rheumatic Disease: Finding Her Power

Alexa was just 15 months old when she saw her first rheumatologist. Her mother and father were frightened – they’d never heard of JIA. They thought that Alexa would be treated, given some medications and would go on to lead a normal life; end of story. The reality of the disease took a while to set in. Luckily, their daughter was diagnosed early and was treated within the “window of opportunity.”

Alexa vividly remembers what it was like to grow up with juvenile arthritis. She knew she was different from most children, particularly at school, and often experienced pain that would prevent her from participating in activities. “Kids would come up to me during PE [physical education] and say that their knees were hurting. They didn’t feel like participating in gym class, so they told our teacher that they had arthritis too. My classmates thought I was ‘faking’ or that I wasn’t really sick. They had no idea what I was feeling inside or what it was like to be me,” she says.

“I tell my story, and I tell it as much as I can. I do it because it’s important for people to learn and know more about my disease. I want other kids out there to know that I understand what they’re going through.” She’s an advocate for the disease and she’s a role model for other children living and dealing with juvenile rheumatoid arthritis. When asked what she wants to be when she grows up, Alexa says, “An actress; I’ve always wanted to be an actress.”

Alexa’s Window of Opportunity: Physician Referral Leads to Unbreakable Bond

Alexa, by many definitions, was lucky. She was lucky to have been diagnosed early – within the “window of opportunity.” Alexa’s pediatrician recognized the signs and symptoms of her disease and referred her family to a rheumatologist for proper treatment. Alexa has been going to the same rheumatologist, Deborah McCurdy, MD, since she was a baby. Their relationship and bond is unbreakable – crafted through years of experiencing highs and lows, successes and failures, struggles and smiles. “Dr. McCurdy is amazing. She calls me on her days off –just to check in. We love her,” says Alexa.

Alexa is living with juvenile rheumatoid arthritis and she’s determined to not let the disease slow her down. Alexa aims to lead a full and productive life, and million other Americans with inflammatory rheumatic diseases share similar hopes and dreams. Through early referrals and receiving early and appropriate treatment from a rheumatologist, the possibilities for these individuals are limitless.