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Hepatitis C: So many questions, so few that make sense

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3 Comments

Grace Campbell

Just don't get me started on language okay? I veer wildly between a Systemic Functional Linguistic approach and a mindset best described as "The Grammar Gestapo". I struggle to reconcile these two wildly divergent belief structures with little success, choosing instead to live a Jekyll & Hyde existence, flip-flopping from one to the other like the arc of a pendulum. It's exhausting!

June 12, 2015

Dallas Duncan

You girls make me larf (no spelling convention, right?) :)

June 11, 2015

Lucinda Porter

Why is there hepatitis C in the world? Answer: Do you mean really or philosophically? It’s probably because of chimps and Darwin. For a better answer, read the factsheet: A Brief History of HCV by Alan Franciscus at the HCV Advocate http://hcvadvocate.org/hepatitis/factsheets.asp Why is it so hard to cure? Answer: Actually, it isn’t hard to cure, especially considering all the other viruses that we’ve known about for much longer. The common cold is hard to cure. How smart do you have to be to invent a cure for this thing - I mean really REALLY smart, right? Answer: I think you do have to be really smart. Who do you think they are, these really really smart people? Don't you wish just once you knew their names and could drop them a thank you? I do! I'd like to send a big ol' packet of Tim Tams to the people who invented Viekira Pak! Ribavirin, not so much, maybe a small packet for them. Sorry, Ribavarians. Answer: Actually, we do know some of their names. I think the inventor of ribavirin should get Vegimite. Durian or lutefisk for the discoverer of interferon. Why was it called non A non B for so long? Isn't it just OBVIOUS to give it the next available letter - to wit, C? I was diagnosed with non A non B hepatitis and I thought "Man, they can't even be bothered to give it its own LETTER!" Answer: Because we didn’t actually know what it was, and you can’t just hand out letters willy-nilly or you might run into problems (see next answer) How many letters are we up to with hepatitis now? Is it E? Is there an F? Answer: There is A,B,C, D, and E. There used to be an F and a G. Hep F was never substantiated, and they shouldn’t have given it a letter – see what happens when you give a virus a letter willy–nilly. Hep G is even more complicated, because although it exists, it really belongs to another group, so now it is GBV-C. And, if that isn’t confusing enough, here is a wild fact - GBV-C may slow the effects of HIV if you have both. What will happen if we run out of letters? Answer: God help us if that happens. The fact that you even asked this makes me wonder if you have been on ribavirin too long. Why does everything normalise after a while? Nothing about my life is really normal right now! I'm on more drugs than the entire cast of Breaking Bad (all legal, guys, settle down ...). I have done so many bloodtests the pathology department knows me by name. And yet - I get up, walk the dog, go to work, come home, cook dinner, go to bed and it starts all over again. Answer: Because while you may feel like you are trapped in a chamber of horrors, your liver is on a holiday because it doesn’t have to fight hep C and make as many new liver cells. It was doing that a trillion times a day – that would exhaust anyone. Please don't tell me you are watching Breaking Bad right now - no wonder you can't sleep. This is a time for I Love Lucy reruns and Abbott and Costello movies. And speaking of normalize – do you think English-speaking countries will ever agree on a few spelling conventions? Why do you read these ramblings of a hep C patient who clearly needs more sleep? Answer: Because you are hilarious, informative, passionate, wise, and you write really well. And finally ...How can we give thanks and give back to the community that has supported us - the fellow travellers in our Hep Tribe? Are you advocating for better access to the new drugs? Are you lobbying? Have you contacted your member of parliament? Are you talking to friends and family about how important treatment is? Are you sharing your fears, your joys, your trials and tribulations so people know what it is like to live with this virus and how there are real possibilities for a cure? Answer: This is how – by blogging and reminding us is what is important. Thank you Grace.

June 11, 2015

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