#138 Living With the World's Rarest Condition (15 people) - Dylan Lombard

About this episode

<p>In this episode of Origin Story, I sit down with someone truly one of a kind—Dylan Lombard. Dylan is one of only 15 people in the world with MDP Syndrome (Mandibular Dysplasia with Deafness and Progeroid Features), a condition that affects physical appearance, fat distribution, and hearing. But Dylan isn’t defined by a diagnosis—he’s a force of creativity, kindness, and visibility.</p><p><br></p><p>We talk about what it’s like growing up with a visible difference, why media representation matters, and how Dylan has used photography, poetry, and dance to connect with the world—and most importantly, with himself.</p><p><br></p><p>WHAT YOU’LL LEARN</p><p><br></p><p>What MDP Syndrome is, how it manifests, and how Dylan was diagnosed</p><p><br></p><p>What it’s like being visibly different online vs. in real life</p><p><br></p><p>Why photography became Dylan’s way of telling his story</p><p><br></p><p>The emotional toll—and power—of social media visibility</p><p><br></p><p>How movies like A Different Man are shifting public perception</p><p><br></p><p>Why face equality and better representation in schools, media, and work matter</p><p><br></p><p>TIMESTAMPS</p><p>00:00 – Welcome + Introducing Dylan Lombard</p><p>00:37 – Growing up with a visible difference</p><p>01:27 – Finding confidence through photography</p><p>02:14 – Sharing his story in the school magazine</p><p>03:24 – Storytelling as connection and advocacy</p><p>04:42 – What is MDP Syndrome?</p><p>06:07 – Photography as an emotional outlet</p><p>06:50 – The medical name and physical effects of MDP</p><p>08:12 – Pain, physical limitations, and the joy of dance</p><p>09:31 – Reframing rarity as a gift</p><p>11:00 – Early signs and years-long path to diagnosis</p><p>12:43 – Living visibly: public reactions in real life and online</p><p>13:59 – Dealing with staring, laughing, and comments</p><p>14:36 – Negative social media comments and their impact</p><p>16:43 – The harmful algorithms of negativity</p><p>18:26 – Finding confidence and community online</p><p>19:55 – How dance and photography build friendships</p><p>20:33 – Representation in film: A Different Man and breaking villain tropes</p><p>22:40 – From “villain” to hero: visibility and storytelling</p><p>23:20 – What people without visible difference should know</p><p>24:48 – Unconscious bias and the need for better education</p><p>25:25 – Dylan’s message for listeners</p><p>26:37 – Final thoughts and where to follow Dylan</p><p><br></p><p>LINKS</p><p>📸 Follow Dylan – https://www.instagram.com/be_yourself_dylan</p><p>🟣 Learn about Face Equality – https://www.changingfaces.org.uk/campaigns/face-equality</p><p>📍 Follow me – https://www.instagram.com/davidmcintoshjr</p><p>💌 Support on Patreon – https://www.patreon.com/davidmcintoshjr</p><p>🛒 Origin Story merch – https://originstoryclub.co.uk</p><p><br></p><p>ABOUT MDP</p><p>MDP stands for Mandibular Dysplasia with Deafness and Progeroid Features. It’s an ultra-rare condition that causes tight skin, hearing loss, an unusually high metabolism, and extreme fat loss in the face and limbs. Only about 15–50 people in the world are known to have it. Dylan is using his visibility to raise awareness and inspire others to embrace who they are.</p><p><br></p><p>ABOUT ORIGIN STORY</p><p>Each week, I sit down with hidden-gem heroes and global voices to uncover the moments that shape who they are—so we can apply their insights to our own lives. Follow the show to hear the next origin story first.</p>