Health Watch: Vt. woman's rare heart condition leads to new research - WCAX

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EAST BARRE, Vt. (WCAX) - A Vermonter with a rare medical condition is sharing her story of physical and mental perseverance. Christina Guessferd spoke with the woman about how her rare condition led to a scientific discovery right here in our region.

In 2016, 22-year-old Kendra Kirkland of East Barre was acclimating to college life in New York City when she woke up one morning with severe discomfort. “I felt like an elephant was sitting on my chest. I felt this immense chest pressure,” Kirkland said.

Later that day at the hospital, she got news no young, otherwise healthy person expects to hear. “They said, ‘It looks like you’re having a heart attack.’ And I started laughing like, ‘You’re joking, I’m 22-years-old, that’s not... no!’” she recalled.

Little did she know, that moment would be the beginning of a long and harrowing journey to solving a mystery diagnosis that stumped a slew of some of the most qualified doctors in the country. For the next few years, Kirkland lived in fear, existing in an exhausted body she didn’t recognize. The uncertainty was punctuated by another four attacks of myocarditis. “I was working 30 hours a week and going to school full time,” Kirkland said.

Myocarditis is a generic term that describes rare inflammation in the heart muscle often caused by infection or autoimmune disease and that can manifest in symptoms like chest pain or discomfort, shortness of breath, heart failure, cardiac arrest, and even death. But in Kirkland’s case, physicians couldn’t find any of the usual underlying issues.

“One of the best cardiologists at NYU called me and said, ‘Kendra, I’ve never seen this before. I do not know what to do with you.’ To hear that from a really famous cardiologist at NYU was terrifying,” Kirkland said.

Then, last summer, five years following her first myocarditis event, Kirkland decided to move back to Vermont and transfer her care to Brigham and Women’s Hospital in Boston since it was closer to home. There, she was working with cardiovascular genetic specialist Dr. Neal Lakdawala.

“Dr. Lakdawala had called me up randomly and he said very excitedly, ‘I solved your case, I believe I solved your case!’ I was in disbelief. Part of me was, you know, happy because this is what I’ve been waiting for for the last five years. Part of me was also a little nervous to find out what it really was,” Kirkland said.

“I just remember her sense of relief and excitement at having an explanation,” Dr. Lakdawala said.

The diagnosis -- DSP cardiomyopathy, a rare mutation in the gene that keeps heart muscles connected. Lakdawala discovered a large French-Canadian family was experiencing the same unique symptoms as Kirkland. “My impression is that they’re probably distantly related and that there are people maybe throughout upper New England and in Quebec who share a common ancestor and therefore have a common cause of heart disease,” Lakdawala said.

Research into gene-related myocarditis is in its infancy, only documented and studied within the last three to four years. Lakdawala says there is no universal treatment to prevent recurrent myocarditis but that cases like Kirkland’s are bringing scientists closer to a breakthrough. “Through her participation and the participation of others, we should be able to advance our understanding of this condition so that future patients are more quickly diagnosed, and perhaps in the future, we can come up with very targetted, specific therapies,” he said.

Today, at 27, Kirkland lives and works in the East Barre home where she grew up. Last August, surgeons implanted a defibrillator to prevent more cardiac arrests. By sharing her story, she hopes to send the message -- be your biggest advocate and never stop fighting for answers. “Dr. Lakdawala changed my life, he really did,” Kirkland said.

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