Ever seen someone so tall and thin they look like they were drawn by a cartoonist? Sometimes that’s just biology being quirky. Other times, it's Marfan syndrome. It’s a genetic thing. Basically, the "glue" that holds your body together—the connective tissue—is a bit too stretchy.
Honestly, most people only know about this condition because of the "basketball player" look. Long arms, spider-like fingers, and a chest that might cave in or poke out. But it’s way more than just being a tall drink of water. For some of the most famous people in history, this condition was either a secret superpower or a ticking time bomb.
The President Who Might’ve Had It: Abraham Lincoln
You can't talk about famous people with Marfan syndrome without starting with Honest Abe. If you look at photos of Lincoln, he’s the poster child for "marfanoid" features. He was 6'4" at a time when the average guy was barely 5'6". His hands were huge. His legs seemed to go on forever.
For decades, historians and doctors have been obsessed with his DNA. They even looked at the blurry foot in one of his photos! Some argued the blur was caused by a pulsating artery—a classic sign of an enlarged aorta, which is the scary part of Marfan.
But here’s the twist: we don’t actually know for sure.
Recent research suggests he might have had something else called MEN2B or even spinocerebellar ataxia. Since the National Museum of Health and Medicine won't let anyone "destroy" his hair or bone samples for a DNA test, it’s all just really educated guessing. Still, Lincoln remains the face of the condition in the public's mind.
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The Tragedy of Jonathan Larson
If you’ve ever belted out "Seasons of Love" from the musical Rent, you know Jonathan Larson’s work. His story is heartbreaking. Larson died at just 35, the night before his show’s first Off-Broadway preview.
He had undiagnosed Marfan syndrome.
He had been going to the ER with chest pains. Doctors told him it was food poisoning. Or maybe the flu. They sent him home. In reality, his aorta—the main pipe moving blood out of his heart—was tearing apart. This is called an aortic dissection. If they had known he had Marfan, they might have saved him. His death changed the way many doctors look at tall, thin patients with chest pain. It wasn't just "stress." It was a structural failure.
The Movie Monster: Javier Botet
You’ve definitely seen Javier Botet, even if you don't recognize his face. He’s the guy inside the costumes of some of the scariest monsters in Hollywood. Think the "Crooked Man" from The Conjuring 2, the title character in Mama, or the terrifying wight in Game of Thrones.
Botet was diagnosed with Marfan when he was five. He’s 6'7" and weighs about 120 pounds. His joints are incredibly flexible. Instead of seeing this as a disability, he turned it into a career. He can move in ways that look like CGI but are actually 100% real. He’s basically turned a genetic mutation into a specialized skill set that nobody else on Earth can match.
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Sports Stars and the "Michael Phelps" Myth
Let’s clear the air on Michael Phelps. For years, people whispered that his 6'7" wingspan and double-jointed ankles meant he had Marfan.
He doesn't.
Phelps has confirmed in his autobiography that he was tested and he’s clear. He’s just a "genetic freak" in the best way possible for a swimmer.
But Isaiah Austin? That was a different story.
Austin was a superstar basketball prospect at Baylor. He was days away from the 2014 NBA draft when a physical revealed he had Marfan syndrome. It crushed his NBA dreams instantly. The risk of his heart literally exploding on the court was too high. NBA Commissioner Adam Silver ended up "drafting" him ceremonially, which was a class act, but it serves as a sobering reminder: sometimes the very traits that make you a great athlete (height and reach) are the ones that make the sport deadly for you.
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How Do You Actually Know If Someone Has It?
It's not just about being tall. My cousin is 6'5" and doesn't have it. To get a real diagnosis, doctors use the Ghent nosology. It’s a fancy word for a checklist.
They look for:
- Aortic root enlargement: This is the big one. If your aorta is stretching, you're in the "red zone."
- Ectopia lentis: This is when the lens of your eye slips out of place. It’s a huge red flag.
- The Systemic Score: Doctors check for a "thumb sign" (can your thumb stick out past your palm when you make a fist?) and a "wrist sign" (can you wrap your thumb and pinky around your other wrist and overlap them?).
If you have a score of 7 or higher and a family history, you likely have it.
Other Notable Names
- Joey Ramone: The lead singer of The Ramones. He was 6'6", lanky, and struggled with health issues tied to the condition.
- Peter Mayhew: The man inside the Chewbacca suit. His height was a result of Marfan, which eventually led to significant mobility issues and heart problems later in his life.
- Bradford Cox: The lead singer of Deerhunter. He’s been very open about how the condition shaped his childhood and his art.
What You Should Do If You're Worried
If you—or your kid—are exceptionally tall, have crowded teeth, a curved spine (scoliosis), or long fingers, don't panic. Most tall people are just tall. But if you have chest pain or sudden vision changes, you need to see a cardiologist who knows about connective tissue disorders.
- Get an Echocardiogram: It’s a simple ultrasound of your heart. It checks the width of your aorta.
- Check Your Eyes: An eye doctor can see if your lenses are stable.
- Genetic Testing: We’ve come a long way. A blood test can now look for mutations in the FBN1 gene.
The good news? If you catch it early, you can live a totally normal, long life. You just might have to swap the high-impact basketball for something like golf or swimming (as long as you aren't pushing for Olympic gold), and maybe take some blood pressure meds to keep your heart relaxed.
Understanding the stories of famous people with Marfan syndrome isn't just about celebrity trivia. It’s about realizing that a "disability" can be a career-maker like it was for Javier Botet, or a silent threat that requires vigilance. Awareness is quite literally the difference between life and death here.
If you suspect you have these traits, schedule a consultation with a clinical geneticist or a cardiologist. Early intervention with beta-blockers or losartan can prevent the aortic complications that claimed lives in the past. Always keep a copy of your most recent "echo" results if you've been diagnosed, as this data is vital for tracking any changes in your heart over time.