Standish, Maine native Mysti Sabourin began having headaches, spells of hearing and vision loss, and hand tremors in December 2019 – shortly before the pandemic made doctors inaccessible and appointments impossible to get.
Mysti, who is autistic and experiences communication difficulties, found it challenging to describe what was happening, but the physical symptoms became so apparent her family began to worry.
After moving back to Maine from Boston due to COVID-19, Mysti’s younger sister, Kacey Sabourin, MG21, was frustrated by the lack of diagnostic options available. So she decided to investigate the symptoms herself.
“Seeing care providers was a nightmare,” Sabourin remembers. “It just became this ping-pong back and forth between care providers all throughout the state of Maine, with significant delays in getting referrals and testing.”
Armed with the skills she was developing to earn a Master of Public Health (MPH) from Tufts University School of Medicine, Sabourin scoured academic journals while her mom dove into resources available at the local library.
“I started to use the resources of PubMed and Google Scholar and several other databases that I wouldn’t have known without being a part of the MPH program,” Sabourin said. “I was looking in journals that weren’t in the United States that had random one-off cases, and after hours and hours of literature review and cross matching all of this data, I had a list of six potential diagnoses-and literally all of them were calling for imaging.”
Months after Mysti began presenting with these symptoms, Sabourin and her mother were able to convince Mysti’s physicians she needed definitive testing.
“I knew the research was solid,” Sabourin said. “I didn’t care who gave her the MRI. We just needed someone to put in the order.”
The Sabourins were stunned by the results of the MRI.
“She ended up having a meningioma,” Sabourin said.
Mysti’s noncancerous brain tumor had grown to about five centimeters, or the size of a lime, by the time it was diagnosed. The next steps happened quickly. Mysti was admitted and surgeons were able to remove the entire tumor.
“Knock on wood, we’re a little over a year-and-a-half out and she’s good,” Sabourin said. “It’s amazing. But I remember going through all of that with family and I don’t think I would’ve ever been able to understand how to use the resources I used without having gone to Tufts.”
