Divorced mom of 20 yr old son (my heart and soul).
Got hep c throug
[More]h being raped in July of 2007. I know for certain when I got hep c
because I have documented negative tests going back two years, the last one being
nine days before I was assaulted.
I have normocytic anemia so hepc treatment was somewhat challenging and I
had difficulties with my blood count for which I was hospitalized many times. I am now past the 1 yr post tx mark and I'm virus free.
update - I treated acutely for seven months with riba and pegasys and I'm now SVR. I thought about stopping tx earlier due to the research on acutes but my doc wouldn't sign off on it, so finally I went to UAB, and their new hepc doc blessed my stopping somewhere around 26 or so weeks of tx. Thank God. Then he said they probably would have blessed my stopping at 12 weeks since I was acute if I'd gone there in the first place. Oh well. live and learn. ;)
I'd like to talk to you for a minute about another disease: Waldenstrom's Macroglobulinemia.
I know its a huge mouthful to repeat, but the even bigger problem is that its a rare, or what they call, "orphan" disease. I believe only about 1500 people in the US are diagnosed every year. Waldenstrom's is a rare cancer, and unfortunately, one of those people is in my family.
As you can imagine, rare, or "orphan" diseases, as they are frequently called, don't get much in the way of research dollars. And it makes sense. Pharma Companies pay for research for the drugs they will be able to market. And its difficult to blame them. But many times, and this is one of them, there are treatment modalities out there already that may well work for Waldenstrom's, we just need the time and researchers allocated to do the research, and to test out these modalities in clinical trials.
Here is a link to a website where you can donate research dollars to this orphan disease. This is the website of Steve Kirsch, someone in another family who is going through this. He is loved by his family just like we love our family member. But he's really been busy since his diagnosis. He's put more of his own money into the research of this disease and others than probably anyone else, private or institutional. Please visit his site.
Just a quick note to say hi! Hey alagirl. I have been going to UAB since 2001. I've had several doctors over the years but since I developed cirrhosis I see Dr. McGuire - really nice guy! Congratulations on your success with treatment. I did 48 weeks back in 2003 and was virus free for 2 weeks after tx but then had a viral surge that resulted in a count 5 times what it was before treatment. I have been going through many of the side effects of cirrhosis over the past year it's as big a drag as the tx was.
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