I've been pestering the doctor about a support group. He called the other patients and two of them gave him permission to give me their phone numbers. I called them on Saturday and we are going to meet next week and talk. I'm hoping this will be a start to a local support group for people with Hepatitis C. The numbers are only going to increase as my generation and the one just ahead of me gets older. More people have Hep C than HIV in the United States, but yet there is hardly any attention given to this blood-borne disease.
I think one of the hardest things with all of this is that there is no one to talk to. My husband has been understanding, but it will be invaluable to talk with someone who is going through the same thing--someone who has dealt with the same fears.
I see the doctor tomorrow and I hope to find out the 4 week viral load. To quote the doctor, "This is a big one for us."
5 comments:
that's really awesome on the support group!
sometimes all you need is someone who not only understands but is there with you as well.
maybe you could start up a blog community as well? who knows how many might be there??
um there with you as well = who has the disease themselves too.
Hi There! Good luck with your support group and THANK YOU for starting one in your area. We just don't have enough of them! You know 2 can be a group when you need someone to talk to that understands. If you build it - they will come! Don't give up. Just keep showing up and it will grow. As you said, Hep C is pretty much ignored even though we outnumber HIV patients about 5 to 1in the U.S. I don't know where you live but you are welcome to join many of us at http://group.yahoo.com/group/HepCingles2 (too!) (for married and Cingles with Hep C) and you can spread the word about your group there. Take care and I hope your test comes back undetectable!
Peace!
Hiya,
I too started treatment in Feb 2009 so am in my third week now of pegulated interferon and ribarivin. I have recently started a blog to try and find further support from others in similar positions.. http://hepatitisctreatment.wordpress.com/
Be interested to hear from you.
Good luck to you!It's all very difficult, but you're not alone. I'd like to invite you and your group to write us your stories and we will post them on our website, anonymously if you wish. We are Greenview Hepatitis C Fund, www.hepcfund.org, which raises awareness of hep C and raises funds for research at the University of Michigan.Stories can be sent to Debbie@hepcfund.org. We also have a blog on the website. More power to you! Debbie Green
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