<description>&lt;p&gt;In this episode we discuss:&lt;/p&gt;&lt;p&gt;* The history of the Beighton Score - how did a tool used for epidemiological studies come to be used to test for EDS? And should it have been?&lt;/p&gt;&lt;p&gt;* The limitations of the current EDS criteria (and what the hell happened with the HSD diagnosis)&lt;/p&gt;&lt;p&gt;* The difficulties of creating a diagnostic criteria for hEDS&lt;/p&gt;&lt;p&gt;* What’s the deal with “the gene”?&lt;/p&gt;&lt;p&gt;* More about Sabeeha’s current work and the exciting future for EDS research…&lt;/p&gt;&lt;p&gt;….and much more!&lt;/p&gt;&lt;p&gt;It was truly fascinating to hear about some of the science that’s going on behind the scenes and I left our conversation feeling hopeful that some of the mysteries surrounding the Ehlers-Danlos Syndromes are one step closer to being solved. &lt;/p&gt;&lt;p&gt;&lt;em&gt;--&lt;/em&gt;&lt;/p&gt;&lt;p&gt;READ THE TRANSCRIPT: &lt;a target="_blank" href="http://natashalipman.com/what-happens-when-diagnostic-criteria-arent-fit-for-purpose"&gt;http://natashalipman.com/what-happens-when-diagnostic-criteria-arent-fit-for-purpose&lt;/a&gt;&lt;/p&gt;&lt;p&gt;SUPPORT THE REST ROOM: &lt;a target="_blank" href="https://natashalipman.substack.com/"&gt;https://natashalipman.substack.com/&lt;/a&gt;&lt;/p&gt;&lt;p&gt;--&lt;/p&gt;&lt;p&gt;You can learn more about Sabeeha’s lab by visiting their &lt;a target="_blank" href="https://mechanochemistry.org/Koester/"&gt;website&lt;/a&gt;, &lt;a target="_blank" href="https://pubmed.ncbi.nlm.nih.gov/33738549/"&gt;read her paper&lt;/a&gt; on the Beighton Score, and follow her on &lt;a target="_blank" href="https://twitter.com/SabeehaMalek"&gt;Twitter&lt;/a&gt;. &lt;/p&gt;&lt;p&gt;Thanks to my brilliant producer Philly Guillou at &lt;a target="_blank" href="https://substack.com/redirect/2e418e62-4a2f-425c-ad39-1c77310f3e30?r=1ahah2"&gt;OG Podcasts&lt;/a&gt;, to &lt;a target="_blank" href="http://lucydove.co.uk/"&gt;Lucy Dove&lt;/a&gt; for the episode art, and to Amit Rai for my intro music. &lt;/p&gt;&lt;p&gt;If you missed my last episode on making the most out of your medical appointments, you can check it out &lt;a target="_blank" href="https://natashalipman.substack.com/p/how-to-make-the-most-of-your-medical#details"&gt;here&lt;/a&gt;. &lt;/p&gt; &lt;br/&gt;&lt;br/&gt;This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit &lt;a href="https://natashalipman.substack.com?utm_medium=podcast&amp;#38;utm_campaign=CTA_1"&gt;natashalipman.substack.com&lt;/a&gt;</description>

The Rest Room

Natasha Lipman

What happens when diagnostic criteria aren't fit for purpose?

NOV 23, 202241 MIN
The Rest Room

What happens when diagnostic criteria aren't fit for purpose?

NOV 23, 202241 MIN

Description

<p>In this episode we discuss:</p><p>* The history of the Beighton Score - how did a tool used for epidemiological studies come to be used to test for EDS? And should it have been?</p><p>* The limitations of the current EDS criteria (and what the hell happened with the HSD diagnosis)</p><p>* The difficulties of creating a diagnostic criteria for hEDS</p><p>* What’s the deal with “the gene”?</p><p>* More about Sabeeha’s current work and the exciting future for EDS research…</p><p>….and much more!</p><p>It was truly fascinating to hear about some of the science that’s going on behind the scenes and I left our conversation feeling hopeful that some of the mysteries surrounding the Ehlers-Danlos Syndromes are one step closer to being solved. </p><p><em>--</em></p><p>READ THE TRANSCRIPT: <a target="_blank" href="http://natashalipman.com/what-happens-when-diagnostic-criteria-arent-fit-for-purpose">http://natashalipman.com/what-happens-when-diagnostic-criteria-arent-fit-for-purpose</a></p><p>SUPPORT THE REST ROOM: <a target="_blank" href="https://natashalipman.substack.com/">https://natashalipman.substack.com/</a></p><p>--</p><p>You can learn more about Sabeeha’s lab by visiting their <a target="_blank" href="https://mechanochemistry.org/Koester/">website</a>, <a target="_blank" href="https://pubmed.ncbi.nlm.nih.gov/33738549/">read her paper</a> on the Beighton Score, and follow her on <a target="_blank" href="https://twitter.com/SabeehaMalek">Twitter</a>. </p><p>Thanks to my brilliant producer Philly Guillou at <a target="_blank" href="https://substack.com/redirect/2e418e62-4a2f-425c-ad39-1c77310f3e30?r=1ahah2">OG Podcasts</a>, to <a target="_blank" href="http://lucydove.co.uk/">Lucy Dove</a> for the episode art, and to Amit Rai for my intro music. </p><p>If you missed my last episode on making the most out of your medical appointments, you can check it out <a target="_blank" href="https://natashalipman.substack.com/p/how-to-make-the-most-of-your-medical#details">here</a>. </p> <br/><br/>This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit <a href="https://natashalipman.substack.com?utm_medium=podcast&#38;utm_campaign=CTA_1">natashalipman.substack.com</a>