But not, it seems, if you have EDS.

All four surgeries have been done on New Zealanders in New Zealand on people with EDS before those people were diagnosed with EDS.

And you know that because you've seen these patients?

They are my patients.

[laughs] And I don't know why it's being blocked.

I don't know why they're refusing to accept it in patients with EDS when they're still treating it in patients without EDS.

He knows because he's seen it happen before.

We also have a problem of some doctors not wanting to refer patients.

So there was one patient who I saw a number of years ago, and I only knew about her 'cause another patient told me, said, "Why haven't you seen this patient?" I said, "I don't know who she is.

I don't have a referral letter." The parents had been told a referral letter had been sent to me six months earlier.

It had never been sent.

I saw her for the first time two days before she died.

[gentle music]

Dysmotility is when food doesn't move through the gut properly

The majority of doctors in the healthcare system, when I approached them about this issue, they always say, "Oh, that group over there, they're on the fringe of, fringes of medicine." What would you say to that? Are you on the fringe?

No.

Like I say, I follow this criteria strictly.

I do not fudge it as one of my colleagues tried to say, suggest I might.

I do not fudge diagnoses.

I follow the criteria strictly.

I follow the pathways set out in there for treatment options strictly.

As much as he rejects the fringe label, for now Dr. Burling is very much in the minority, and that really takes its toll.

And that's where I think a lot of this falls into invisible.

Actually, I agree a lot with that.

The problem is that there are very few bloods that will help with the diagnostic process.

The genetics only cover the rare types.

The most common type, hypermobile EDS, does not have any known genetics to date.

Even though there are major studies looking at this, we still do not have an answer for genetics for hypermobile type.

While you can see abnormalities on a tissue biopsy, not many people get tissue biopsies, even for hypermobile type EDS.

It's like there's these criteria that you're talking about, but can someone see it across different criteria? It may not