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.
Most people with congenital heart disease (CHD) are diagnosed at birth. But Dr. Kornelia “Nelly” Polyak found out about her condition in medical school.
After a lesson on cardiology, the teacher demonstrated an EKG on Nelly. Everyone was surprised by the abnormal result, and an echocardiogram confirmed that Nelly had CHD.
“I didn’t believe it at first. I was active, otherwise healthy, and felt fine — how could I have a heart problem,” says Nelly, who modestly describes herself as “more active than most people.”
Soon she learned she had an atrioventricular canal defect (ASVD), a hole in her heart that disrupted proper blood flow and also affected her mitral valve.
“It was pretty big,” says Nelly, “and I was warned my heart could fail before my 40th birthday if I didn’t have surgery.” …
Most 11-year-old boys don’t own multiple dress suits, nor have they testified at a State Capitol. But Carson Domey is far from typical. As his Twitter handle suggests (@POTUSIT), he’s in training to be President.
This year has been a particularly productive one for Carson, as he takes cues for his 2044 presidential campaign. Five years ago, though, Carson was thinking more about getting a diagnosis than practicing politics.
Starting around age 6, Carson’s cheeks and gums would mysteriously become puffy and red. “It would come and go, and was something that only a mom would pick up on,” remembers Carson’s mother, Michelle. She took him to a dentist and an otolaryngologist, but the symptoms were always gone by appointment time, so neither doctor was concerned.
The Experience Journals were created to promote healthy coping strategies for children, teens and families facing adversity and chronic illness. They were founded by Drs. David DeMaso and Joseph Gonzalez-Heydrich of the Boston Children’s Hospital Department of Psychiatry, and are a collection of stories and experiences from patients and families about what it has been like to live with a significant physical and/or emotional condition.
These stories represent the collective wisdom of children, teens, parents and health care providers. Here are some of their stories, in their own words. …