Marfan syndrome

She was 31 years old.

Hyman's initial cause of death was thought to be a heart attack, but an autopsy revealed that she died from a tear in her aorta, caused by an undiagnosed condition known as Marfan syndrome.

Marfan syndrome is a genetic disorder of the connective tissue.

People suffering from it have a defect in their connective tissue that substantially weakens it over time.

And you've got connective tissue pretty much everywhere in your body, so it could cause some big problems.

Outwardly, those with Marfans tend to be especially tall and thin, like Flo Hyman, with loose, flexible joints and noticeably longer limbs and fingers.

Those long fingers and bendy joints have actually helped some athletes and musicians do things that the rest of us can't.

Famous blues guitarist Robert Johnson, piano virtuoso Sergei Rachmaninoff, and Italian violinist Niccolo Paganini are all believed to have had Marfan syndrome.

There's the question of, you know, like, what's my ApoA? It was almost undetectable, so it's not like I have, you know, that risk factor.

I obviously don't have Marfan's or anything like that.

So when we've looked into, you know, the reasons why, I just-- we keep coming back to we don't yet have an answer.

And that's been part of my journey on this is, you know, I really wanted an answer, um, and I'd still love to have one, but for a while, that was one of my biggest struggles is if I had an answer, maybe I could then have a way to help prevent it in the future.

There's a lot of...

Marfan's isn't not the only...

Condition that we've got to worry about.

My dude from Stranger Things.

You also may have one of the very first papers that linked hypermobility to what was then called Asperger's syndrome, talked about ligamental laxity and also about a condition called Marfan's.

People who either have Marfan syndrome, which is one of the hypermobility syndromes, or are Marfanoid, they often have not only the long, thin fingers, but they also may have a long, thin face.

Once I gave an amazing talk.

I thought it was an amazing talk, not an amazing talk, a talk at an amazing conference called the International Association for Dance Medicine Science.

We're getting medical students rotations.

We're getting into their first and second years into the classroom, teaching them about, you know, all the connective tissue disorders, not just EDS, but all the other connective tissue disorders, including Marfan's and Loeys-Dietz, where maybe they had one sentence about this in their entire four years, or maybe, maybe two.

I, I, I'm not even too sure.

But they [chuckles] you know, they have to be taught this.

What are the four major causes of POTS? Lyme disease, Bartonella, long COVID, which at the time when I saw her, COVID wasn't even around, and mold.

Those are the four major cause that usually cause postural orthostatic tachycardia, although Ehlers-Danlos syndrome and Marfan's and other things with, as you know, with hypermobility syndrome can be affected.

Yeah, my daughter has it.

Right, can be affected by it.

And I think, not to throw shade on a certain population, but I think chiropractors more so than anybody are the ones out there diagnosing people with cranial cervical instability.

Unless you had trauma, unless you have an underlying condition like rheumatoid arthritis, Down syndrome, Marfan's, Ehlers-Danlos, some type of connective tissue disorder, it's unlikely.

It's just unlikely.

And again, that's not the way our body works.

You have too many.

Marfan the Marfan.

What else? There's other ones.

I can't remember.

We think it was a genetic cause, albeit that we've never narrowed it down as to what that actually was.

They've looked at Marfan's and some of the other kind of regular sort of the usual suspects and they've all been ruled out.

But I'd just turned 40 and obviously I'm female.

And, yeah, I presented with pains in my, well, at first I thought it was kind of heartburn type symptom and I ignored it.