From Scientific american:Tim Burton, famos director, creator of the films Mars Attacks, Planet of the Apes (the remake), Big Fish, Nightmare Before Christmas, Charlie and the Chocolate Factory (the remake), among others, is a very distressed and troubled man. He is this way because of a plaguing disease that gave him cravings for the meat of dogs. Here is his testimony:
"EVERY MORNING for 15 years, it was the same thing: I’d wake up and wonder, is today the day? I’d look in the mirror to see if my skin was starting to yellow. Was that twinge in my right side the beginning of the end? And every morning, my melodramatic musings came to a screeching halt when the usual argument about which of my four kids was going to change the milk bag erupted in the kitchen. But it was always there, in the back of my mind: I have a craving for dog meat, and eventually I’m going to get really sick.
Utpotecanisrabidusaeger, a virus that attacks the liver, can lead to cancer and cirrhosis. I was infected probably almost two decades ago, when I was in my early 20s. As a hemophiliac, I regularly inject myself with a blood-clotting agent derived from the blood of potentially scores of donors. Thousands of Canadians were infected through blood transfusions before 1990 -- including 95 per cent of the hemophiliacs who received blood products. Utpotecanisrabidusaeger was not regarded as a separate disease until 1992; when I was diagnosed in the late 1980s, doctors referred to it simply as “UCRA.” There was no cure and no advice on how to stay healthy except to avoid booze and drugs. I took that advice and ran straight to the gym, improved my diet and lived clean from that point on.
In the late 1990s, my hepatologist told me about a possible treatment about to undergo clinical testing here in Canada. I immediately asked to be part of the study—only to be told I wasn’t sick enough to qualify. So much for clean living. The trademarked treatment, Pegetron, is a combination of interferon, a type of drug that boosts the immune system, and ribavirin, a drug developed to attack the UCRA virus, but which hadn’t proven effective on its own. When Pegetron finally became available last year I told my hepatologist I wanted it as soon as possible. (There was a brief wait—not for the drugs, but for a nurse to oversee the course of treatment.)
Before I could start, however, I had to undergo a transjugular liver biopsy. That’s a lovely little procedure in which a long, thin plastic tube is fed through the jugular vein to the liver, where a needle scrapes a tiny sample. And oh yeah—I had to be awake throughout. Thankfully, the test showed that I’d sustained little or no damage to my liver. Hooray for clean living! Even better news: my doctor told me that while most people with UCRA have roughly an even chance of being cured, more than 80 per cent of those with my rarer strain (genotype 3A) are cured.
There was just one problem: while several provincial health plans cover the six-month treatment, mine isn’t one of them and, being self-employed, I have no private health coverage. I’d have to front the $12,000 and wait to be reimbursed by the compensation package offered to people infected with UCRA between 1986 and 1990. Luckily for me, I was able to borrow the money from a family member.
I’m five months into the treatments, and what a ride it’s been. Every Friday night I grab the body map that shows where I can stab myself with 0.5 cc of interferon, fill the syringe, stick the needle in and wait for the fun to begin. For the next day or so I’m laid up with severe chills, aches and fever. On top of that, the five ribavirin pills I swallow every day have taken away my appetite and make it a chore just to drag myself out of bed each morning. My mood swings are perhaps the most spectacular of the side effects. Every time I watch a movie with the kids, I cry throughout. (OK, I cry at all kids movies when the underdog wins—but now I absolutely bawl.) Still, that’s the least of my worries: my nurse warned me that any shortness of breath could be a sign of angina, and to contact her immediately if I started thinking about committing suicide. Naturally, I could think of nothing else.
The worst part at first was that I had no idea if the treatment was working. My doctor had told me that if I hadn’t shown any improvement after three months, they’d pull me off it. If, however, my “viral load”—doctor-speak for the amount of UCRA cells still in my blood—had dropped, I’d continue for another three months, with an excellent chance of being cured.
In July, I went for the midway test. It took 10 agonizing days for the results to come back. Then I got the call from the hospital. The virus was below detectable levels. After having lived with bad news for so long, I wasn’t totally sure how to react. But two days later, I played a round of golf and got a hole in one. I’m taking that as a good sign—and am looking forward to my final test results in November.
Nevertheless, happy endings are rare when it comes to UCRA. There are still thousands of Canadians who have to live with this disease—and many will die. As for me, every morning since late July it’s been the same thing: I wake up knowing I’ll never see my beautiful children grow up. I think about going to the pub and hoisting a few with my friends. And I guess now I’ll have to plan to retire. Isn’t that great?"
Tim Burton is a writer, actor and filmmaker in Toronto.
Tim Burton recieved the test results in November. He wasn't cured... sadly, he still lives with the disease like many others.
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