On Dec. 2 and 3, a think tank of experts convened at the University of Florida at the George T. Harrell Medical Education Building to discuss swallowing disorders.
Hosted by cofounders of the Swallowing Systems Core, Drs. Ianessa Humbert and Emily Plowman, the Swallowing Think Tank drew in 16 world experts in the field.
Swallowing disorders are often brought on by the onset of another medical issue, such as stroke, Parkinson’s disease, ALS and other neurological issues. Patients are unable to swallow correctly, often relying on a feeding tube for assistance.
“It started with what seems like a simple question: what defines a normal swallow?” said Plowman, who focuses on swallowing disorders in patients with Lou Gehrig’s disease (ALS). “Interestingly, even with world experts in a room, that’s actually quite a controversial topic or conversation where everyone doesn’t always agree.”
The event, which was the first of its kind, was unscripted and designed to allow for free-flowing thought and discussion from both clinicians and experts.
“The idea was to sit in a room and ruminate and discuss where we are now, where are the gaps to the best clinical management of swallowing disorders and where we need to go,” said Plowman.
In addition to the 16 invited attendees, graduate and PhD students were able to attend the Swallowing Think Tank. Humbert and Plowman also sponsored a junior faculty member so that they could observe and partake in the event.
After the think tank, UF PhD students provided an overview and synopsis of the proceedings to outside experts.
One of the most notable experts in attendance was Dr. Christy Ludlow, former chief of the Laryngeal and Speech Section at the National Institutes of Health. Ludlow, who is now retired, selectively attends conferences.
“At the time, she was one of two women who were chiefs of labs in that particular institute,” said Humbert. “She has such a wealth of knowledge in terms of direction that we should go and how to push things forward,” she said.
“What was really special to me was that we were lucky enough to have a neuroscientist in attendance who lives with swallowing disorders and he was able to provide input from a patient standpoint,” said Plowman. “His wife was also able to provide information about how this affects their daily living and quality of life, meal preparations and anxiety.”
“Swallowing is hidden in plain sight; everyone knows they’ve been doing it since they were born, but nobody knows how they do it or when it becomes problematic,’ said Humbert. “They didn’t even know swallowing could ‘go bad’, so to speak, so that means that we have a lot of responsibility, but we also have a lot of room to really impact people’s lives,” she said.
“I was very interested in a helping profession and the ability to communicate and to eat are so pivotal to who we are,” said Plowman. “Some people eat to live and others live to eat. Food is such a big part of one’s quality of life.”
“Imagine the last five times you caught up with friends or loved ones, I can bet you that it involves drinks and food,” said Plowman.
Plowman and Humbert, who combined their labs and expertise, pioneer classes at UF that offer hands on experience, while orchestrating events such as the Swallowing Think Tank.
“In my mind, one plus one doesn’t equal two; it’s the synergistic coming together of these minds that creates so much more,” said Plowman.
For advocates like Lisa Ingrassia, this research does not go unnoticed. Ingrassia, a writer for the Huffington Post, established the Albert J. Ingrassia Fund as a part of the National Foundation of Swallowing Disorders.
After being diagnosed with stage five base of the tongue cancer, Ingrassia’s father underwent aggressive radiation that permanently impaired his ability to swallow.
“Imagine celebrating a loved one’s birthday. You sing happy birthday, blow out the candles on a beautiful cake, only to take it away because they are unable to swallow,” said Ingrassia. “It is heartbreaking and devastating.”
Meikele Lee also experienced life-altering complications resulting from a loved one suffering from a swallowing disorder. Her youngest child is undiagnosed, has normal anatomy and normal genetic testing, but is still only able to swallow three milileters at a time, which is less than a teaspoon.
“Like many other feeding tube kids, he is a ‘medical mystery’ and research always uncovers more so that someday we can have a diagnosis or a reason for what he has and is going through,” said Lee.
Lee, who authored the children’s book “My Belly Has Two Buttons,” has drastically changed her lifestyle to accommodate for her child’s disability.
“Medical appointments and therapy rule the day and our life. We have had to go from both working to only one working parent who has two jobs to meet our financial needs, while still having a competent caregiver at home,” said Lee.
“Anything that makes healthcare providers examine pediatric feeding disorders is awesome. The more they can understand the functions that can be affected which limit a child’s ability to hydrate and eat by mouth, I’m excited to hear,” said Lee. “Then we wouldn’t have so many parents and carers who feel isolated and alone, or like the medical system has given up on their child.”
“I love the quote ‘hope is in the science,’” said Plowman. “I am working in a patient population where right now we don’t have an effective treatment, but the hope for these patients is in the scientific discovery and questions for further knowledge,” she said.