Vanessa’s rash first appeared on her arms and legs when she was 3 or 4 months old. It was red and bumpy and went away when she was sick with a virus, which happened often. Then it would come back. The dermatology team she saw at Boston Children’s Hospital was puzzled.
“I was expecting they were going to think it was nothing, but they took it very seriously,” says Katherine Bell, one of Vanessa’s mothers. “They took a biopsy and very quickly realized they had no idea what it was.”
Vanessa’s case was even featured at a regional dermatology conference where doctors take up mystery patients. “A hundred to 150 dermatologists looked at her,” says Katherine. But no one could pinpoint a diagnosis. …
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.