Skip to main content

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

We encourage you to republish this article online and in print.

Creative Commons Attribution 4.0 licence symbols

Read our republishing guidelines

This article is published under the Creative Commons Attribution 4.0 licence (CC BY 4.0). This means that you may copy, edit and distribute the work, including commercial use but there are some conditions.

Conditions

  1. You must attribute the work to:
    1. The original author and
    2. to Mosaic, and
    3. include the link (online) or the URL (print) of the story

    Suggested code:

    This <a href="https://mosaicscience.com/story/giving-breath-issue-what-happened-after-our-stories-dysphagia">article</a> first appeared on <a href="https://mosaicscience.com">Mosaic</a> and is republished here under a Creative Commons licence.
    Copy
  2. If you’re republishing online, include the page view counter specific to this article using code:
    <img src="http://mosaicscience.com/mwt-republish-img/1590/republish.gif" />
    Copy
  3. Images in this feature are copyright of the illustrator, who has allowed them to be republished online with the story, with the credit “© Alice Mollon for Mosaic”. If you would like to republish them in print, you will need to contact the copyright holder.

HTML of copy

HTML for the full article including the attribution and page view counter:

<h1>Giving breath to the issue: What happened after our stories on dysphagia?</h1><section class="abstract"><p>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.</p>
</section><p>Three years ago, while I was researching <a href="https://mosaicscience.com/story/dysphagia-swallowing-disorders/">a story for Mosaic</a>, a doctor told me that having a severe swallowing disorder is like being “constantly waterboarded”.</p>
<p>In March 2016, my feature explaining the dire effects of the disorder known as dysphagia went live, along with shorter pieces on a <a href="https://mosaicscience.com/story/inside-swallowing-disorders-support-group/">support group</a> and a <a href="https://mosaicscience.com/story/bean-dog-who-couldnt-swallow/">dysphagic dog</a>. 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?</p>
<p>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.</p>

<span>Newsletter:&nbsp;</span>
<p>“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.”</p>
<p>Judging by social media and emails I’ve received, the silence is lifting a bit. <em>This is what I study</em>, said a scientist in Ohio. <em>This is what my mother has</em>, said a woman from Portland, Oregon. <em>This is me</em>, said people from London, Atlanta and Dallas.</p>
<p>“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.”</p>


    <aside class="inline-extra--item">
      <a href="/story/dysphagia-swallowing-disorders"></a>
      <h3 class="inline-extra--label">Extra</h3>
      <a href="/story/dysphagia-swallowing-disorders">Dysphagia: it’s like being waterboarded 24 hours a day</a>
      <p class="extras-list--text"></p>
    </aside>
  
<p>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.”</p>
<p>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.</p>
<p>Useful info comes in bits: from one-to-one conversations with others who have the condition, from <a href="https://swallowingdisorderfoundation.com/online-swallowing-support-groups/">online</a> or <a href="https://mosaicscience.com/story/inside-swallowing-disorders-support-group/">in-person support groups</a>, 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.</p>
<p>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”.</p>
<p>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.</p>
<p>“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.</p>
<p>“And that’s life-changing. So life-changing.”</p>
<p>&nbsp;</p>
<p><strong>Read our <a href="https://mosaicscience.com/story/mosaic-five-impact-change-world-policy-patients-health/">other pieces celebrating the impact of five years of Mosaic stories</a> – including updates on our stories on teens in Iceland, safer surgery in Mongolia and postpartum psychosis.</strong></p>

<p>Three years ago, while I was researching <a href="https://mosaicscience.com/story/dysphagia-swallowing-disorders/">a story for Mosaic</a>, a doctor told me that having a severe swallowing disorder is like being “constantly waterboarded”.</p>
<p>In March 2016, my feature explaining the dire effects of the disorder known as dysphagia went live, along with shorter pieces on a <a href="https://mosaicscience.com/story/inside-swallowing-disorders-support-group/">support group</a> and a <a href="https://mosaicscience.com/story/bean-dog-who-couldnt-swallow/">dysphagic dog</a>. 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?</p>
<p>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.</p>

Newsletter:&nbsp;
<p>“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.”</p>
<p>Judging by social media and emails I’ve received, the silence is lifting a bit. <em>This is what I study</em>, said a scientist in Ohio. <em>This is what my mother has</em>, said a woman from Portland, Oregon. <em>This is me</em>, said people from London, Atlanta and Dallas.</p>
<p>“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.”</p>


    
      <a href="/story/dysphagia-swallowing-disorders"></a>
      <h3 class="inline-extra--label">Extra</h3>
      <a href="/story/dysphagia-swallowing-disorders">Dysphagia: it’s like being waterboarded 24 hours a day</a>
      <p class="extras-list--text"></p>
    
  
<p>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.”</p>
<p>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.</p>
<p>Useful info comes in bits: from one-to-one conversations with others who have the condition, from <a href="https://swallowingdisorderfoundation.com/online-swallowing-support-groups/">online</a> or <a href="https://mosaicscience.com/story/inside-swallowing-disorders-support-group/">in-person support groups</a>, 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.</p>
<p>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”.</p>
<p>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.</p>
<p>“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.</p>
<p>“And that’s life-changing. So life-changing.”</p>
<p>&nbsp;</p>
<p><strong>Read our <a href="https://mosaicscience.com/story/mosaic-five-impact-change-world-policy-patients-health/">other pieces celebrating the impact of five years of Mosaic stories</a> – including updates on our stories on teens in Iceland, safer surgery in Mongolia and postpartum psychosis.</strong></p>

<img src="http://mosaicscience.com/mwt-republish-img/1590/republish.gif" />This <a href="https://mosaicscience.com/story/giving-breath-issue-what-happened-after-our-stories-dysphagia">article</a> first appeared on <a href="https://mosaicscience.com">Mosaic</a> and is republished here under a Creative Commons licence.
Copy

Questions?

Email us at mosaic@wellcome.ac.uk