<description> &lt;p&gt;In this episode, we talk with Robyn Beer, who was diagnosed with VEDS, or Vascular Ehlers-Danlos syndrome, last year. One of her sons was also diagnosed. In this episode, she shares how she got her diagnosis, and how she is moving forward with it. &lt;/p&gt; &lt;p&gt;Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at &lt;a href="http://thevedsmovement.org"&gt;thevedsmovement.org&lt;/a&gt;, &lt;a href="http://loeysdietz.org"&gt;loeysdietz.org&lt;/a&gt;, and &lt;a href="http://marfan.org"&gt;marfan.org&lt;/a&gt;.&amp;nbsp;You can also find information and resources through the John Ritter Foundation, &lt;a href="https://johnritterfoundation.org" title="johnritterfoundation.org"&gt;johnritterfoundation.org&lt;/a&gt; &lt;/p&gt; &lt;p&gt;&lt;strong&gt;Links to resources, events, and research opportunities:&amp;nbsp;&lt;/strong&gt;&lt;/p&gt; &lt;p&gt;VEDS Collaborative Research Study: Email &lt;a href="mailto:vedscoll@ohsu.edu"&gt;vedscoll@ohsu.edu&lt;/a&gt;&amp;nbsp;&lt;/p&gt; &lt;p&gt;Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:&lt;/p&gt; &lt;p&gt;&lt;a href="https://marfan.org/calendar"&gt;https://marfan.org/calendar&lt;/a&gt;&lt;/p&gt; &lt;p&gt;Join a Walk for Victory:&lt;/p&gt; &lt;p&gt;&lt;a href="https://marfan.org/walk/"&gt;https://marfan.org/walk/&lt;/a&gt;&lt;/p&gt; &lt;p&gt;Help and Resource Center&lt;br&gt;&lt;br&gt;&lt;a href="https://marfan.org/ask"&gt;https://marfan.org/ask&lt;/a&gt;&lt;/p&gt; &lt;p&gt;&lt;a href="https://loeysdietz.org/ask"&gt;https://loeysdietz.org/ask&lt;/a&gt;&lt;/p&gt; &lt;p&gt;&lt;a href="https://thevedsmovement.org/ask"&gt;https://thevedsmovement.org/ask&lt;/a&gt;&lt;/p&gt; &lt;p&gt;&lt;strong&gt;Listener Survey&lt;/strong&gt;&lt;/p&gt; &lt;p&gt;&lt;a href="https://www.surveymonkey.com/r/8W37WKN" title=""&gt;https://www.surveymonkey.com/r/8W37WKN&lt;/a&gt; &lt;/p&gt; &lt;p&gt;&lt;strong&gt;Support&lt;/strong&gt;&lt;/p&gt; &lt;p&gt;Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: &lt;a href="https://staying-connected.printify.me/products"&gt;https://staying-connected.printify.me/products&lt;/a&gt;&amp;nbsp;&lt;/p&gt; &lt;p&gt;You can make a one-time donation to Translucent One LLC at &lt;a href="https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8"&gt;https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8&lt;/a&gt;, or you can also support this podcast by subscribing to my Patreon at &lt;a href="https://www.patreon.com/Translucentone"&gt;https://www.patreon.com/Translucentone&lt;/a&gt;. &lt;/p&gt; &lt;p&gt;Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:&lt;/p&gt; &lt;p&gt;Jon Holtom&lt;br&gt;Adventuresinlove4Andie&lt;br&gt;Ryan Rodarmer&lt;br&gt;Benjamin Weisman&lt;br&gt;Fiona McIver&lt;/p&gt; &lt;div class="simplesocialbuttons simplesocial-simple-icons simplesocialbuttons_inline simplesocialbuttons-align-left post-813 post simplesocialbuttons-inline-no-animation"&gt; &lt;button class="ssb_fbshare-icon" rel="nofollow" target="_blank" aria-label="Facebook Share" data-href="https://www.facebook.com/sharer/sharer.php?u=https://staying-connected.blubrry.net/2025/12/16/robyn-beer/" onClick="javascript:window.open(this.dataset.href, '', 'menubar=no,toolbar=no,resizable=yes,scrollbars=yes,height=600,width=600');return false;"&gt; &lt;span class="icon"&gt;&lt;svg xmlns="http://www.w3.org/2000/svg" viewBox="0 0 16 16" class="_1pbq" color="#ffffff"&gt;&lt;path fill="#ffffff" fill-rule="evenodd" class="icon" d="M8 14H3.667C2.733 13.9 2 13.167 2 12.233V3.667A1.65 1.65 0 0 1 3.667 2h8.666A1.65 1.65 0 0 1 14 3.667v8.566c0 .934-.733 1.667-1.667 1.767H10v-3.967h1.3l.7-2.066h-2V6.933c0-.466.167-.9.867-.9H12v-1.8c.033 0-.933-.266-1.533-.266-1.267 0-2.434.7-2.467 2.133v1.867H6v2.066h2V14z"&gt;&lt;/path&gt;&lt;/svg&gt;&lt;/span&gt; &lt;span class="simplesocialtxt"&gt;Share &lt;/span&gt; &lt;/button&gt; &lt;button class="ssb_tweet-icon" rel="nofollow" target="_blank" aria-label="Twitter Share" data-href="https://twitter.com/intent/tweet?text=Robyn+Beer&amp;url=https://staying-connected.blubrry.net/2025/12/16/robyn-beer/" onClick="javascript:window.open(this.dataset.href, '', 'menubar=no,toolbar=no,resizable=yes,scrollbars=yes,height=600,width=600');return false;"&gt; &lt;span class="icon"&gt;&lt;svg viewBox="0 0 16 14" fill="none" xmlns="http://www.w3.org/2000/svg"&gt;&lt;path d="M4.9 0H0L5.782 7.7098L0.315 14H2.17L6.6416 8.8557L10.5 14H15.4L9.3744 5.9654L14.56 0H12.705L8.5148 4.8202L4.9 0ZM11.2 12.6L2.8 1.4H4.2L12.6 12.6H11.2Z" fill="#fff"/&gt;&lt;/svg&gt;&lt;/span&gt;&lt;i class="simplesocialtxt"&gt;Post &lt;/i&gt;&lt;/button&gt; &lt;button class="ssb_linkedin-icon" rel="nofollow" target="_blank" aria-label="LinkedIn Share" data-href="https://www.linkedin.com/sharing/share-offsite/?url=https://staying-connected.blubrry.net/2025/12/16/robyn-beer/" onClick="javascript:window.open(this.dataset.href, '', 'menubar=no,toolbar=no,resizable=yes,scrollbars=yes,height=600,width=600');return false;" &gt; &lt;span class="icon"&gt; &lt;svg version="1.1" id="Layer_1" xmlns="http://www.w3.org/2000/svg" xmlns:xlink="http://www.w3.org/1999/xlink" x="0px" y="0px" width="15px" height="14.1px" viewBox="-301.4 387.5 15 14.1" enable-background="new -301.4 387.5 15 14.1" xml:space="preserve"&gt; &lt;g id="XMLID_398_"&gt; &lt;path id="XMLID_399_" fill="#FFFFFF" d="M-296.2,401.6c0-3.2,0-6.3,0-9.5h0.1c1,0,2,0,2.9,0c0.1,0,0.1,0,0.1,0.1c0,0.4,0,0.8,0,1.2 c0.1-0.1,0.2-0.3,0.3-0.4c0.5-0.7,1.2-1,2.1-1.1c0.8-0.1,1.5,0,2.2,0.3c0.7,0.4,1.2,0.8,1.5,1.4c0.4,0.8,0.6,1.7,0.6,2.5 c0,1.8,0,3.6,0,5.4v0.1c-1.1,0-2.1,0-3.2,0c0-0.1,0-0.1,0-0.2c0-1.6,0-3.2,0-4.8c0-0.4,0-0.8-0.2-1.2c-0.2-0.7-0.8-1-1.6-1 c-0.8,0.1-1.3,0.5-1.6,1.2c-0.1,0.2-0.1,0.5-0.1,0.8c0,1.7,0,3.4,0,5.1c0,0.2,0,0.2-0.2,0.2c-1,0-1.9,0-2.9,0 C-296.1,401.6-296.2,401.6-296.2,401.6z"/&gt; &lt;path id="XMLID_400_" fill="#FFFFFF" d="M-298,401.6L-298,401.6c-1.1,0-2.1,0-3,0c-0.1,0-0.1,0-0.1-0.1c0-3.1,0-6.1,0-9.2 c0-0.1,0-0.1,0.1-0.1c1,0,2,0,2.9,0h0.1C-298,395.3-298,398.5-298,401.6z"/&gt; &lt;path id="XMLID_401_" fill="#FFFFFF" d="M-299.6,390.9c-0.7-0.1-1.2-0.3-1.6-0.8c-0.5-0.8-0.2-2.1,1-2.4c0.6-0.2,1.2-0.1,1.8,0.2 c0.5,0.4,0.7,0.9,0.6,1.5c-0.1,0.7-0.5,1.1-1.1,1.3C-299.1,390.8-299.4,390.8-299.6,390.9L-299.6,390.9z"/&gt; &lt;/g&gt; &lt;/svg&gt; &lt;/span&gt; &lt;span class="simplesocialtxt"&gt;Share&lt;/span&gt; &lt;/button&gt; &lt;div class="fb-like ssb-fb-like" aria-label="Facebook Like" data-href="https://staying-connected.blubrry.net/2025/12/16/robyn-beer/" data-layout="button_count" data-action="like" data-size="small" data-show-faces="false" data-share="false"&gt;&lt;/div&gt; &lt;/div&gt; &lt;p&gt;&lt;a href="https://staying-connected.blubrry.net/2025/12/16/robyn-beer/"&gt;Source&lt;/a&gt;&lt;/p&gt;</description>

Staying Connected

Katie Wright

Robyn Beer

DEC 16, 202542 MIN
Staying Connected

Robyn Beer

DEC 16, 202542 MIN

Description

<p>In this episode, we talk with Robyn Beer, who was diagnosed with VEDS, or Vascular Ehlers-Danlos syndrome, last year. One of her sons was also diagnosed. In this episode, she shares how she got her diagnosis, and how she is moving forward with it. </p> <p>Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at <a href="http://thevedsmovement.org">thevedsmovement.org</a>, <a href="http://loeysdietz.org">loeysdietz.org</a>, and <a href="http://marfan.org">marfan.org</a>.&nbsp;You can also find information and resources through the John Ritter Foundation, <a href="https://johnritterfoundation.org" title="johnritterfoundation.org">johnritterfoundation.org</a> </p> <p><strong>Links to resources, events, and research opportunities:&nbsp;</strong></p> <p>VEDS Collaborative Research Study: Email <a href="mailto:[email protected]">[email protected]</a>&nbsp;</p> <p>Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:</p> <p><a href="https://marfan.org/calendar">https://marfan.org/calendar</a></p> <p>Join a Walk for Victory:</p> <p><a href="https://marfan.org/walk/">https://marfan.org/walk/</a></p> <p>Help and Resource Center<br><br><a href="https://marfan.org/ask">https://marfan.org/ask</a></p> <p><a href="https://loeysdietz.org/ask">https://loeysdietz.org/ask</a></p> <p><a href="https://thevedsmovement.org/ask">https://thevedsmovement.org/ask</a></p> <p><strong>Listener Survey</strong></p> <p><a href="https://www.surveymonkey.com/r/8W37WKN" title="">https://www.surveymonkey.com/r/8W37WKN</a> </p> <p><strong>Support</strong></p> <p>Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: <a href="https://staying-connected.printify.me/products">https://staying-connected.printify.me/products</a>&nbsp;</p> <p>You can make a one-time donation to Translucent One LLC at <a href="https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8">https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8</a>, or you can also support this podcast by subscribing to my Patreon at <a href="https://www.patreon.com/Translucentone">https://www.patreon.com/Translucentone</a>. </p> <p>Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:</p> <p>Jon Holtom<br>Adventuresinlove4Andie<br>Ryan Rodarmer<br>Benjamin Weisman<br>Fiona McIver</p> <div class="simplesocialbuttons simplesocial-simple-icons simplesocialbuttons_inline simplesocialbuttons-align-left post-813 post simplesocialbuttons-inline-no-animation"> <button class="ssb_fbshare-icon" rel="nofollow" target="_blank" aria-label="Facebook Share" data-href="https://www.facebook.com/sharer/sharer.php?u=https://staying-connected.blubrry.net/2025/12/16/robyn-beer/" onClick="javascript:window.open(this.dataset.href, '', 'menubar=no,toolbar=no,resizable=yes,scrollbars=yes,height=600,width=600');return false;"> <span class="icon"><svg xmlns="http://www.w3.org/2000/svg" viewBox="0 0 16 16" class="_1pbq" color="#ffffff"><path fill="#ffffff" fill-rule="evenodd" class="icon" d="M8 14H3.667C2.733 13.9 2 13.167 2 12.233V3.667A1.65 1.65 0 0 1 3.667 2h8.666A1.65 1.65 0 0 1 14 3.667v8.566c0 .934-.733 1.667-1.667 1.767H10v-3.967h1.3l.7-2.066h-2V6.933c0-.466.167-.9.867-.9H12v-1.8c.033 0-.933-.266-1.533-.266-1.267 0-2.434.7-2.467 2.133v1.867H6v2.066h2V14z"></path></svg></span> <span class="simplesocialtxt">Share </span> </button> <button class="ssb_tweet-icon" rel="nofollow" target="_blank" aria-label="Twitter Share" data-href="https://twitter.com/intent/tweet?text=Robyn+Beer&url=https://staying-connected.blubrry.net/2025/12/16/robyn-beer/" onClick="javascript:window.open(this.dataset.href, '', 'menubar=no,toolbar=no,resizable=yes,scrollbars=yes,height=600,width=600');return false;"> <span class="icon"><svg viewBox="0 0 16 14" fill="none" xmlns="http://www.w3.org/2000/svg"><path d="M4.9 0H0L5.782 7.7098L0.315 14H2.17L6.6416 8.8557L10.5 14H15.4L9.3744 5.9654L14.56 0H12.705L8.5148 4.8202L4.9 0ZM11.2 12.6L2.8 1.4H4.2L12.6 12.6H11.2Z" fill="#fff"/></svg></span><i class="simplesocialtxt">Post </i></button> <button class="ssb_linkedin-icon" rel="nofollow" target="_blank" aria-label="LinkedIn Share" data-href="https://www.linkedin.com/sharing/share-offsite/?url=https://staying-connected.blubrry.net/2025/12/16/robyn-beer/" onClick="javascript:window.open(this.dataset.href, '', 'menubar=no,toolbar=no,resizable=yes,scrollbars=yes,height=600,width=600');return false;" > <span class="icon"> <svg version="1.1" id="Layer_1" xmlns="http://www.w3.org/2000/svg" xmlns:xlink="http://www.w3.org/1999/xlink" x="0px" y="0px" width="15px" height="14.1px" viewBox="-301.4 387.5 15 14.1" enable-background="new -301.4 387.5 15 14.1" xml:space="preserve"> <g id="XMLID_398_"> <path id="XMLID_399_" fill="#FFFFFF" d="M-296.2,401.6c0-3.2,0-6.3,0-9.5h0.1c1,0,2,0,2.9,0c0.1,0,0.1,0,0.1,0.1c0,0.4,0,0.8,0,1.2 c0.1-0.1,0.2-0.3,0.3-0.4c0.5-0.7,1.2-1,2.1-1.1c0.8-0.1,1.5,0,2.2,0.3c0.7,0.4,1.2,0.8,1.5,1.4c0.4,0.8,0.6,1.7,0.6,2.5 c0,1.8,0,3.6,0,5.4v0.1c-1.1,0-2.1,0-3.2,0c0-0.1,0-0.1,0-0.2c0-1.6,0-3.2,0-4.8c0-0.4,0-0.8-0.2-1.2c-0.2-0.7-0.8-1-1.6-1 c-0.8,0.1-1.3,0.5-1.6,1.2c-0.1,0.2-0.1,0.5-0.1,0.8c0,1.7,0,3.4,0,5.1c0,0.2,0,0.2-0.2,0.2c-1,0-1.9,0-2.9,0 C-296.1,401.6-296.2,401.6-296.2,401.6z"/> <path id="XMLID_400_" fill="#FFFFFF" d="M-298,401.6L-298,401.6c-1.1,0-2.1,0-3,0c-0.1,0-0.1,0-0.1-0.1c0-3.1,0-6.1,0-9.2 c0-0.1,0-0.1,0.1-0.1c1,0,2,0,2.9,0h0.1C-298,395.3-298,398.5-298,401.6z"/> <path id="XMLID_401_" fill="#FFFFFF" d="M-299.6,390.9c-0.7-0.1-1.2-0.3-1.6-0.8c-0.5-0.8-0.2-2.1,1-2.4c0.6-0.2,1.2-0.1,1.8,0.2 c0.5,0.4,0.7,0.9,0.6,1.5c-0.1,0.7-0.5,1.1-1.1,1.3C-299.1,390.8-299.4,390.8-299.6,390.9L-299.6,390.9z"/> </g> </svg> </span> <span class="simplesocialtxt">Share</span> </button> <div class="fb-like ssb-fb-like" aria-label="Facebook Like" data-href="https://staying-connected.blubrry.net/2025/12/16/robyn-beer/" data-layout="button_count" data-action="like" data-size="small" data-show-faces="false" data-share="false"></div> </div> <p><a href="https://staying-connected.blubrry.net/2025/12/16/robyn-beer/">Source</a></p>