Autoinflammatory diseases are a group of rare illnesses that cause recurrent episodes of fever and inflammation resulting from inappropriate activation of the immune system. While some have unknown causes, autoinflammatory diseases are often caused by genetic mutations. Symptoms include acute episodes of fever and other symptoms such as joint pain, rash, sores in the mouth, enlarged glands or abdominal pain, depending on their underlying illness.
A few months ago, Bonnie Godas, a Braintree mother of two, called a friend at the Massachusetts Statehouse asking a simple question. That friend phoned a friend at the Massachusetts Department of Transportation.
Several phones calls later, Bonnie heard the news. On May 21, Boston’s iconic Zakim Bridge will be lit purple in recognition of Lupus Awareness Month.
“I’m excited. I’m grateful and thrilled that Charlotte is doing so well,” says Bonnie. “It’s so important for parents to know about lupus because it can mask itself as other conditions like fibromyalgia and rheumatoid arthritis.”
Lupus is an unpredictable and diagnostically challenging automimmune disorder. The immune system mistakenly attacks parts of one’s own body. This can damage organs, especially the kidneys and the blood vessels, if it isn’t diagnosed and treated.
Bonnie is well aware of how difficult it can be to diagnose lupus. Five years ago, her daughter Charlotte, now 19, started experiencing minor aches and pains and stomach issues. Her symptoms worsened, and Bonnie brought her to a local specialist.
Charlotte underwent a series of tests, including a liver biopsy and colonoscopy. “We weren’t getting answers,” recalls Bonnie.
Olivia Burgess knows every nook and cranny of Boston Children’s Hospital. The 13-year-old and her parents have traveled from their home in Bermuda to Boston since Olivia was three years old for ongoing treatments for systemic onset juvenile rheumatoid (idiopathic) arthritis and pediatric lupus.
“The unpredictable and severe nature of Olivia’s condition and the frequent travel required for medical treatment can be stressful at times,” says her mother Traci. Olivia sees providers in multiple departments: cardiology, nephrology, pulmonology, dermatology, neurology, gastroenterology and orthopedic surgery.
Drs. Fatma Dedeoglu and Marybeth Son, both in the Boston Children’s Rheumatology Program, are Olivia’s primary providers and serve as home base for her frequent visits. “We have cared for Olivia since she was a toddler. She’s like one of our own children,” says Dedeoglu.
The hospital’s four-legged, furry volunteers and their owners also play important roles in Olivia’s care and help the teen stay positive.
Olivia is an enthusiastic participant in Boston Children’s Pawprints Program — the hospital’s dog visitation service.
“Her face lights up when she talks about dogs. This program can really make a difference for kids who love animals,” says Son. …
The Franciscan Hospital for Children Heartbreak Hill 5K on June 14, 2014, was a special day for Justin Ith. It was the first time the 16-year-old, who weighed a mere 70 pounds at the time, had been outside for months. As a nurse pushed the wheelchair-bound teen across the finish line, he turned to her and vowed, “Next year, I’m going to finish this race by myself.”
A few months earlier, Justin had been living the life of the average high school student. Skateboarder. Guitar player. Anime aficionado.
“I thought I was invincible. I thought nothing could ever happen to me.”
Justin’s road to rock bottom started in December 2013. His joints were swollen and sore, and it hurt to move. The activities he loved—skateboarding, playing the guitar—were out of the question.
His pediatrician referred him to Boston Children’s Hospital Rheumatology Program, where Drs. Pui Lee and Robert Fuhlbrigge diagnosed him with reactive arthritis, a condition typically related to infection, and prescribed prednisone to manage his joint pain and control his discomfort.
The medication seemed to help. But on Justin’s 16th birthday—March 7, 2014—everything changed. …