#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.