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.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.
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.
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.
No comments:
Post a Comment