Unshelved by Bill Barnes and Gene Ambaum
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Friday, July 30, 2010

There are a lot of good things about the Internet

and one is how available information is directly to the user. Case in point:

Drug given to Stoke-on-Trent woman after web search

A father has persuaded the NHS to give his sick daughter a drug he found on the internet.

Charlotte Durham, 18, from Stoke-on-Trent, who has a rare brain condition leading to severe headaches, described the treatment as a miracle.

Her father Andy discovered the drug was successful used to help 24 out of 26 patients during a medical study in Greece.

South Staffordshire Primary Care Trust has agreed to pay for it on the NHS.
The daughter was facing having a shunt put in to deal with her condition, which was not responding to any other treatment. This goes to show that an informed patient and family can make a difference. The trick is that once the information is found, you must advocate for treatment, especially in a bureaucracy. I have no doubt that a medical librarian could have helped the health care team find this one, too, but I'm glad the father did, and I hope the young woman does very well.

I have a friend that has severe headaches due to fluid pressure on the brain. I wonder if this is the same condition? It's called idiopathic intercranial hypertension. I'll have to ask him. Perhaps there's some serendipity happening here.

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