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.
After a few months, the doctor performed an antinuclear antibody (ANA) test, which detects abnormal proteins. The results suggested Charlotte could have lupus.
Bonnie felt it was important to seek compassionate care for her daughter and decided to seek a second opinion at Boston Children’s Hospital.
“When we met Dr. Sundel and he explained Charlotte’s condition to us, I knew we had found Charlotte’s doctor,” she says.
Sundel started Charlotte on steroids to quickly relieve her symptoms. The next step was adding other medications to her regimen.
“The goal was to keep her on a mild medicine that would maintain control of her lupus with minimal risk of side effects,” explains Dr. Robert Sundel, who is director of the Boston Children’s Rheumatology Program.
“When I was first diagnosed, I had joint pain and was extremely tired. The steroids helped a lot,” says Charlotte.
Now, Charlotte takes one pill a day to control her symptoms and sees Sundel every four months for an evaluation and lab testing
During her appointments, Sundel and Charlotte talk about how she is feeling, and how she is coping with her lupus.
“I remind Charlotte how important it is for her to take care of herself, both physically and emotionally. Our goal is to detect small issues and prevent them from becoming large ones,” says Sundel.
Sundel’s approach to care is working wonderfully for Charlotte. She hasn’t had flares, or exacerbation of her lupus symptoms, in years. “If I feel like I’m getting fatigued, I’m sure to rest. And I try to manage stress because that seems to be linked to flares,” she says.
Their doctor-patient relationship works so well that Charlotte, Bonnie and Sundel agree this compassionate, proactive approach to Charlotte’s health should continue as she transitions to an adult provider.
Bonnie and Charlotte plan to go to the Zakim Bridge on May 21 to take photos to commemorate the bridge lighting and are already planning to create a team for the Walk to End Lupus Now on October 22.
Looking for care? Learn more about the Boston Children’s Rheumatology Program.