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alagirl is

doing much better this morning, thanks!

About Me:

Female, 41, AL, member since Aug 2007

Divorced mom of 19 yr old son (my heart and soul).  I'm in sales and work from
home most of the time.... [More]

Got hep c through 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 is somewhat challenging and I've already
had difficulties with my blood count.  I began tx on 10-5 and so far I have had six blood transfusions.  Still, I think this is my best time to treat since I have a new acute infection and a bad genotype.  (1b)
------------------------------------------------------------
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.

http://www.bringlight.com/projects/show/127

http://skirsch.com/index.html

http://skirsch.com/wm/wm.htm

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mremeet



	Leave a Note Send Message Add as Friend mremeet Male, 42 years East Fun Buck - Burkina Faso Member since Aug 2006 Mood: mremeet is annoyed by this stupid mood feature

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debnevada



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merryBe



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Where have all the flowers gone...

Jul 20, 2008 02:43PM - 2 Comments

And our photos next to our screennames by the way?.... ;) lol So yesterday I took my phone down to this phone guy to see if he co...[more]

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Jul 17, 2008 10:04PM

So I've decided to open a cake decorating business with my best friend and her family. We are hoping to use the back of a friend's...[more]

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Med Help: Missing Post on Diet ?

1 hour ago in the Hepatitis C Community

you know, since we aren't moderated forums, they need to quit moderating us unless we have a problem and specificly ask f...

kissing?

1 hour ago in the Hepatitis C Community

I am posting this over here because posting over there would have further upset her, but you know, it takes a really sick...

Hepatitis-C & Vegetables/Fruit

2 hours ago in the Hepatitis Social Community

there is no non drug "cure" for hep c (yawning). sure there may be some supportive nutritional supplements, but no cures...

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Just a quick note to say hi!

You deserve a big bear hug!

You're in my thoughts all the time, but especially today.

Thank you for everything!

Welcome to our community!

You are in my thoughts and prayers.

Hope you feel better soon!

Congratulations! Time for a celebration...

Just wanted to let you know I can relate. If you ever want to talk, you know where to find me.

Deb_c430



	Leave a Note Send Message Add as Friend Deb_c430 Female CA Member since Dec 2007 Mood: Deb_c430 is praying for Nick and Elaine Journal Entry: "Well, Charm is considering selling her bo..." [Read]

Jul 18

You deserve a big bear hug! :) I feel the same about you! friends to me are not lip service, you are all a reality to me! Hugsssssssssssss

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celtic70



	Leave a Note Send Message Add as Friend celtic70 Male, 44 years melbourne - Australia Member since Jul 2008 Mood: celtic70 is finally doing something ! Journal Entry: "Decided I'm sick and tired of worrying ab..." [Read]

Jul 16

Really touched by your experiences. Will be following your progress with interest and best wishes. Glad to hear you are feeling ok today ! Take care..

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Deb_c430



	Leave a Note Send Message Add as Friend Deb_c430 Female CA Member since Dec 2007 Mood: Deb_c430 is praying for Nick and Elaine Journal Entry: "Well, Charm is considering selling her bo..." [Read]

Jul 14

You're in my thoughts all the time, but especially today. sending you hugs and stuff, !

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Zepora



	Leave a Note Send Message Add as Friend Zepora Female BC Member since Jun 2008 Mood: Zepora is feeling really done in by doing too much! Journal Entry: "Well, I guess that's the way life goes, y..." [Read]

Jul 14

You're in my thoughts all the time, but especially today.Good Luck on your test results regarding the excess iron and let us know how it goes. We're all praying for you. Have they tested you for Hemachromatosis? Hugs

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britt505



	Leave a Note Send Message Add as Friend britt505 Male, 54 years Portland - OR Member since Jul 2008 Mood: britt505 is ...

Jul 13

Thank you for your remarks. I'm still learning about this site and the protocol. You sound like a fun person. I was thinking about the ice cream part.I have southern parents and my father was stationed in Alabama for part of his service. He always had favorable things to say about the people of your state. Anyway, best...

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	Leave a Note for Just a note Hugs Thinking of you Thank You Welcome Prayer Feel better Congrats! I Can Relate Just a quick note to say hi! Add as friend Post It Never Mind 800 character limit exceeded Just a quick note to say hi! You deserve a big bear hug! You're in my thoughts all the time, but especially today. Thank you for everything! Welcome to our community! You are in my thoughts and prayers. Hope you feel better soon! Congratulations! Time for a celebration... Just wanted to let you know I can relate. If you ever want to talk, you know where to find me.