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The Struggle to Swallow: Living with Unusual Dysphagia

By Mary Lin McNeill

As a child, I always knew that something was different about the way I ate. My mom would tell me stories of how, since birth, I would “chew” everything before swallowing, even liquids like milk. It was a habit that I couldn’t shake off. As I grew older, I had a hard time learning to swallow pills, and it wasn’t until I was 26 that I could finally do it. However, my dysphagia started worsening in 2020, and I found myself unable to swallow pills at all without choking or throwing them up immediately.

As a child, my pediatrician couldn’t figure out why I was still unable to swallow pills even using the usual “tricks.” So when I was about 12, I had a swallow study done. The results were perplexing. I “chewed” everything, even water, and they had never seen anything like it before. In 2019, I was diagnosed with dysautonomia, a medical condition that affects the autonomic nervous system, which controls the body’s automatic functions such as heart rate, blood pressure, breathing, and digestion. Following this dignosis, I started a journey of being diagnosed further with related comorbid conditions over the next two years.

While undergoing so much medical work up, around June of 2020, I began having more frequent episodes of choking on my food and having difficulty initiating a swallow. The “chewing” of all my foods including liquids and soft foods like pudding and jello got significantly worse. Eventually, I learned in 2021 that my swallowing issues were caused by a genetic condition called Hypermobile Ehlers Danlos Syndrome.

The speech-language pathologist who had treated my dad, who had passed away from an undiagnosed neuromuscular disorder that caused severe dysphagia, eventually resulting in aspiration pneumonia, recommended that I undergo another swallow study. The results showed that I had a significantly delayed swallow, and while I was not aspirating, I was definitely at risk for it with liquid sitting in my throat before I could initiate a swallow, and that the delay increased the risk of food entering and blocking my airway. I started Speech Therapy to address my swallowing difficulties soon after the swallow study and have continued to this day.

My speech-language pathologist has said that my dysphagia presents similarly to her patients with Parkinson’s, Myasthenia Gravis, and other neuromuscular disorders, but my neurologist has said my other symptoms don’t match those diseases. My neurologist recommended that since I was unable to swallow any of my pills (except for the very few that were liquid or dissolvable), I might want to speak to my GI doctor about placing a PEG tube (i.e., a feeding tube). In September of 2021, I had a PEG tube placed, and it has improved my quality of life significantly, allowing me a way to receive my medications and nutrition.

We still don’t know for sure whether my dysphagia is caused by my EDS or dysautonomia (or a combination of both), or whether it’s caused by an as-yet-undiscovered condition. But I am hoping to be referred to a neurogastroenterologist soon to rule out anything serious, especially given my family history with my dad. It’s been a long journey, but I’m holding out hope that I will eventually get the answers I’m looking for.