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Rare Condition Makes Life Unpredictable For Child

Cordelia_Skuldt
Cordelia Skuldt has a rare heart condition. (CBS)

CHICAGO (CBS) -- Imagine your child is playing when she suddenly collapses for no apparent reason.

That is what happened to one northwest suburban family, and it turned out their daughter has a rare pulmonary condition with no cure.

CBS 2's Dana Kozlov reports, the family wants to warn others.

A simple act like playing with the family dog, could kill 10-year-old Cordelia Skuldt if she exerts herself.

"So you always have that in the back of your mind," said Cordelia's mom, Juliet, "is there going to be an episode or event that will involve her heart."

Cordelia has pulmonary hypertension, a rare and difficult to diagnose condition causing abnormally high blood pressure in the arteries of her lungs."

"Because it's a rare disease, most doctors, the majority of doctors are not trained to look for this," said Lisa Beth Gansberg of the Pulmonary Hypertension Association.

"It's scary; it's really, really scary," said Cordelia.

And it's always with her.

"Even just everyday life," she said. "Like, is this going to be an OK day or is this going to be a terrible day? I can't predict at all."

She takes expensive medication, has to monitor her vitals and sleeps with oxygen every night.

Now the Skuldts want other people to know about the symptoms--and dangers--of a condition that, if untreated, often means sudden death.

Cordelia was diagnosed at age four, two months after collapsing inside a story.

Officials cannot say how many people have the condition because it is often misdiagnosed.

The symptoms include fatigue and shortness of breath and are often associated with other ailments.

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