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

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.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.WHAT YOU’LL LEARNWhat MDP Syndrome is, how it manifests, and how Dylan was diagnosedWhat it’s like being visibly different online vs. in real lifeWhy photography became Dylan’s way of telling his storyThe emotional toll—and power—of social media visibilityHow movies like A Different Man are shifting public perceptionWhy face equality and better representation in schools, media, and work matterTIMESTAMPS00:00 – Welcome + Introducing Dylan Lombard00:37 – Growing up with a visible difference01:27 – Finding confidence through photography02:14 – Sharing his story in the school magazine03:24 – Storytelling as connection and advocacy04:42 – What is MDP Syndrome?06:07 – Photography as an emotional outlet06:50 – The medical name and physical effects of MDP08:12 – Pain, physical limitations, and the joy of dance09:31 – Reframing rarity as a gift11:00 – Early signs and years-long path to diagnosis12:43 – Living visibly: public reactions in real life and online13:59 – Dealing with staring, laughing, and comments14:36 – Negative social media comments and their impact16:43 – The harmful algorithms of negativity18:26 – Finding confidence and community online19:55 – How dance and photography build friendships20:33 – Representation in film: A Different Man and breaking villain tropes22:40 – From “villain” to hero: visibility and storytelling23:20 – What people without visible difference should know24:48 – Unconscious bias and the need for better education25:25 – Dylan’s message for listeners26:37 – Final thoughts and where to follow DylanLINKS📸 Follow Dylan – https://www.instagram.com/be_yourself_dylan🟣 Learn about Face Equality – https://www.changingfaces.org.uk/campaigns/face-equality📍 Follow me – https://www.instagram.com/davidmcintoshjr💌 Support on Patreon – https://www.patreon.com/davidmcintoshjr🛒 Origin Story merch – https://originstoryclub.co.ukABOUT MDPMDP 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.ABOUT ORIGIN STORYEach 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.