This article popped up last week in my Google news alerts under "idiopathic intracranial hypertension."  While it's a very sweet story that the three girls are doing something so nice for the little girl with IIH, I was a bit shocked when the child's IIH case was described as "life-threatening" ... have you guys ever heard of that?  So sad to think of that adorable girl making a "bucket list" at age 7!  :(  I wonder why.  Maybe her IIH is secondary to another condition?  Why wouldn't they mention that though...

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Interesting story but extremely misleading.  I hope there is more to the story that the news is not sharing.  Unfortunately, this story in and of itself will cause terror I'm many who read it that have IIH and will suddenly think they are terminal. 

Not good!

I agree.  sounds like the family may be under some misunderstanding.  if it was from something in particular they wouldn't have said "idiopathic".

We have come up against this before via Twitter, and both times managed to get the article changed to properly reflect the different types of IH. If the little girl had Acute IH then yes it is life threatening as we know. This type is usually caused by severe head injury or intracranial bleed or stroke. The differences are very clear, so the parents have either misunderstood or dare I say, making more of it than they should be. Any credible journalist should check information thoroughly regarding health issues and conditions. 

It is very annoying when this disease is misrepresented and the information incorrect.

Update to this story:

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Here's the final story. They didn't spell it right, but at least they didn't mention it being a life threatening disease this time. I can't imagine enduring this as a child, but I wish the parents/reporters would have spent more time on getting the details right.

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