Alexandra Sifferlin

And it is, it's an issue because, of course, clinicians don't have necessarily time to go through the last five years of somebody's medical record.

So it can be a very frustrating experience on both ends.

Yes.

So the Proctor family is a family of five siblings.

They are from rural Kentucky.

And they all experienced these episodes of basically, could almost describe it as freezing in place.

So they walk for, let's say, anywhere from five to ten minutes.

And all of a sudden, it's like their limbs are frozen.

hardening.

It's hard to move forward.

It's incredibly painful.

And they had no idea what was happening, basically.

The oldest of these siblings, her name is Louise, and she is the one who, after decades of these episodes and going from physician to physician, finally really

went to her primary care doctor and said, I need something else.

I need help.

I'm desperate.

Is there anyone else out there?

And thankfully, her doctor knew of this program.

It was new at the National Institutes of Health called the Undiagnosed Diseases Program, which is now the Undiagnosed Diseases Network.

But basically, these are