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Giving breath to the issue: What happened after our stories on dysphagia?

Bryn Nelson’s no-holds-barred articles on people who can’t swallow normally hit a chord with our readers, including those tackling the condition themselves.

Three years ago, while I was researching a story for Mosaic, a doctor told me that having a severe swallowing disorder is like being “constantly waterboarded”.

In March 2016, my feature explaining the dire effects of the disorder known as dysphagia went live, along with shorter pieces on a support group and a dysphagic dog. Publications as far afield as the US, the UK, Australia, China and India reprinted them. But then what? Did these stories have any lasting impact?

After publication, I received an email from one of the people featured in the main piece – Samantha Anderson, who now lives in Noosa Heads, Australia. She told me that my story had cause a snowball effect in Australia and led to follow-ups in multiple outlets.

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“As much as I hope this raises awareness and helps to educate the public,” she says, “I equally hope that those suffering alone or in silence can draw comfort and know there are places to go and people who can help.”

Judging by social media and emails I’ve received, the silence is lifting a bit. This is what I study, said a scientist in Ohio. This is what my mother has, said a woman from Portland, Oregon. This is me, said people from London, Atlanta and Dallas.

“Sometimes, I think that it’s most important to simply give breath to things like this,” Steve McCloskey, a Seattle resident with dysphagia who also featured in my piece, says. “And, in the process, people who need to hear the message most will be directed there.”

People with dysphagia have told me over and over that most doctors know very little. “In my experience, many physicians have no clue about things like this,” says Jim Stith, who recently contacted me from Chicago to share his story of having dysphagia. “I know more about swallowing today than they do.”

He says that finding good information on dysphagia is extremely difficult and that the Mosaic article was the “best, most useful piece” that he’s found.

Useful info comes in bits: from one-to-one conversations with others who have the condition, from online or in-person support groups, from studies and stories. A detail in my feature, on the importance of maintaining good oral hygiene, made such an impression on Stith that he contacted one of my sources to learn more. “I would never have come across that myself,” he says.

Samantha Anderson is measuring her progress one bite at a time. She says that her swallow is getting better due to “all the tiny little bits of pieces of the puzzle that I’ve gotten from so many different areas”.

In December, for the first time in years, she could eat a holiday favourite: a Cherry Ripe candy bar filled with cherry, chocolate and shredded coconut.

“Any small improvement in your swallow can mean you can all of a sudden eat a whole new group of foods that you couldn’t eat before,” she says.

“And that’s life-changing. So life-changing.”

 

Read our other pieces celebrating the impact of five years of Mosaic stories – including updates on our stories on teens in Iceland, safer surgery in Mongolia and postpartum psychosis.