Origin Story with David McIntosh Jr #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 LEARN
What MDP Syndrome is, how it manifests, and how Dylan was diagnosed
What it’s like being visibly different online vs. in real life
Why photography became Dylan’s way of telling his story
The emotional toll—and power—of social media visibility
How movies like A Different Man are shifting public perception
Why face equality and better representation in schools, media, and work matter
TIMESTAMPS
00:00 – Welcome + Introducing Dylan Lombard
00:37 – Growing up with a visible difference
01:27 – Finding confidence through photography
02:14 – Sharing his story in the school magazine
03:24 – Storytelling as connection and advocacy
04:42 – What is MDP Syndrome?
06:07 – Photography as an emotional outlet
06:50 – The medical name and physical effects of MDP
08:12 – Pain, physical limitations, and the joy of dance
09:31 – Reframing rarity as a gift
11:00 – Early signs and years-long path to diagnosis
12:43 – Living visibly: public reactions in real life and online
13:59 – Dealing with staring, laughing, and comments
14:36 – Negative social media comments and their impact
16:43 – The harmful algorithms of negativity
18:26 – Finding confidence and community online
19:55 – How dance and photography build friendships
20:33 – Representation in film: A Different Man and breaking villain tropes
22:40 – From “villain” to hero: visibility and storytelling
23:20 – What people without visible difference should know
24:48 – Unconscious bias and the need for better education
25:25 – Dylan’s message for listeners
26:37 – Final thoughts and where to follow Dylan
LINKS
📸 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.uk
ABOUT MDP
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.
ABOUT ORIGIN STORY
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.