Held together with faulty glue

It turns out I’m held together with faulty glue. This explains my weird running style, my medical history, and probably why I can’t throw a ball to save my life.

I have Loeys-Dietz Syndrome (LDS), a rare genetic connective tissue disorder. In simple terms, it means my body’s “structural materials” aren’t quite right.

Connective tissue is like the scaffolding and glue that holds us together; it’s in our skin, blood vessels, bones, cartilage, and organs. In LDS, the genetic instructions for making that scaffolding have a glitch. That glitch can make tissue weaker (more likely to stretch or tear), looser (more flexible than it should be), more fragile (less able to handle stress or pressure).

My first clue

Back in 2010, I had an exceptionally bad headache. After some poking and prodding by some specialists, they found a tear in my left carotid artery. Fortunately, it was just the inside layer that tore, the outer wall held.

Imagine a hosepipe with a bulge because the inside has torn but the outside is intact. That was my carotid artery. The tear was in an awkward spot, so they decided not to fix it… just keep an eye on it. Fifteen years later, I’m pleased to say it is still the same.

At the time they suspected a connective tissue disorder because my carotid artery was tortuous (doctor for “squiggly”), and several other vessels were too. But no genetic test was done… they just kept a close eye on me and told me not to ride rollercoasters.

Fast-forward to 2023–2024

I had a minor operation in early 2023, and the anaesthesiologist was nervous about giving me a general anaesthetic because of my medical record. She suspected a connective tissue disorder and wanted me to have a heart scan first.

One of the risks with these disorders is aortic aneurysm, when the aorta (the main artery from the heart) stretches too wide. Turns out my aortic root was 43 mm. For a tall man “normal” is usually mid–high 30s. Not immediately alarming, but worth keeping an eye on.

That led to a visit to a heart specialist, a referral to a geneticist and a diagnosis of Loeys-Dietz and a check in with some vascular specialists.

By the time I saw my heart specialist again in August 2025, my aortic root measured 47 mm.

Why that matters

In Loeys-Dietz, the surgery threshold is lower than in other conditions… usually 40 mm to 45 mm is the point for a conversation. But at 47 mm, I’m officially and firmly in this “let’s talk” territory.

The good news is that this is controlled and elective, not an emergency. I feel well, my blood pressure is awesome, and I have time to talk through the options with a specialist. Surgery is almost certain, but we’re aiming to make that decision with time to spare.

Where I am now (August ‘25)

My next step is meeting with an aortic surgery specialist to confirm measurements, review everything and decide on timing.

It’s a lot to take in, it is scary but knowing what’s happening and catching it early… which means I get to do something about it.

Faulty glue or not, I’m still standing. And I plan to keep it that way.