Chun has hemophilia; a bleeding disorder that means his blood does not clot. So he could bleed to death from even the smallest cut. (emphasis mine)No, he couldn’t bleed to death from the smallest cut.
Part of any advocacy work is providing education about the particular issue of interest. It’s frustrating that loads and loads of work that goes into educating the public about hemophilia can be nullified by one sentence in one article where the research and fact-checking wasn’t done.
Because the bleeding disorders community is (thankfully) small getting free publicity in the form of news articles is extremely valuable. But misinformation like this does nothing to serve our greater goals.
3 comments:
I shrugged that comment off, I was more put off by the following sentence:
"If I was to get hit internally, I could die in seconds," Chun said.
It seems the patient, Chun, himself doesn't have a grasp on his own condition, or he's just trying to get extra sympathy for his cause.
I read the same article and couldn't get past the comment "If I was to get hit internally, I could die in seconds". How does one get HIT INTERNALLY?
I'm also a little iffy on the math - two treatments a month - up to $150,000 a month for factor - that's up to $75,000 per dose. Either he is really heavy or his insurance is getting screwed on the price per unit. Just my opinion.... I don't have all the facts.
Thanks for writing this.
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