Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
Ladies and gentlemen of the Hepatitis C community, I plead with everyone about getting involved in the future of HEP C treatment and the education of both the doctors and general public. I just received a forwarded email from the folks that are fighting to get us more money to bring more services to our disease. The problem is the current HEP C advocates are a small group that is getting really tired of being pushed around by the AIDS community who want contorl over all the government money. After reading only a couple of emails (I just joined the HEP C advocate group last week) I am mad as heck. The Executive Director of AIDS Treatment Data Network stated at the end of his comment that the people fighting for our care is a bunch of moody drama queens. Boy did that make me want to scream.
The battle is that the AIDS community wants the care and research of HEP C all to go under their umbrella and the HEP C people want it seperated because like myself I do not have AIDS and therefore did not even qualify to get group support in my city. I am tired of being ignored and not noticed for whom I am. I am like most of you hard working tax paying americans with a disease most doctors cannot even spell let alone know about. We fight and struggle just to find people who understand the side effects of the disease alone. Heaven forbid we are duo diagnoised. We are depressed and taking medicine that has more side effects than the disease itself. That is why I have not done treatment yet, I am not convinced there is only one answer out there. IT IS TIME TO STEP OUT AND BE NOTICED-Our voices are the only thing that will make a difference. The world needs to know we exist and are willing to work together to help solve this dilema and we are not all homosexuals like the AIDS community wants everyone to believe we are. WE NEED OUR OWN PROGRAMS THAT SUPPORT OUR ISSUES NOT THEIRS. Until this past July I had a great job for over 21 years, paid super high preimums to have a great medical team and trying to manage my disease with herbals. I have stayed out of politics until now. I have no insurance, (thank God I had all my tests done before now), no way to get the expensive treatment I so desperatly need, only to find out I am not to depressed to start. I am stage 3 bridgeing fibrosis with early cirrhosis, my viral load is 450,000 and thank God the rest of my organs are ok. I also have a second liver disease that is not even in the SSDI blue book, its called STEATOHEPATITIS (fatty liver syndrome) this disease will progress you to cirrhosis quicker than HEP C alone. I lost my husband to AIDS back in 1996, and I could not have children so I have to fight this by myself along with injecting insulin (insulin resistant now from HEP C). My spine is so bad I take morphine just to stay out of bed. Please join me in this fight for our medical care and future treatments. Join me in the fight-Please visit www.hepcchallenge.org and write your senators and congressman and please send an email to kenf@atdn.org (Ken Fornataro) and let him know we are out there and not going to stand by and let his group get all the funding that rightfully belongs to us. Also send your email to the director at hepcchallenge.or and let them know your story. OUR CRIES NEED TO BE HEARD.
Thank you all for listening and supporting me in this community. Let us get the treatment and support we so desperatly need buy being real AMERICANS and joining together to fight for our equal rights to government money.
The battle is that the AIDS community wants the care and research of HEP C all to go under their umbrella and the HEP C people want it seperated because like myself I do not have AIDS and therefore did not even qualify to get group support in my city. I am tired of being ignored and not noticed for whom I am. I am like most of you hard working tax paying americans with a disease most doctors cannot even spell let alone know about. We fight and struggle just to find people who understand the side effects of the disease alone. Heaven forbid we are duo diagnoised. We are depressed and taking medicine that has more side effects than the disease itself. That is why I have not done treatment yet, I am not convinced there is only one answer out there. IT IS TIME TO STEP OUT AND BE NOTICED-Our voices are the only thing that will make a difference. The world needs to know we exist and are willing to work together to help solve this dilema and we are not all homosexuals like the AIDS community wants everyone to believe we are. WE NEED OUR OWN PROGRAMS THAT SUPPORT OUR ISSUES NOT THEIRS. Until this past July I had a great job for over 21 years, paid super high preimums to have a great medical team and trying to manage my disease with herbals. I have stayed out of politics until now. I have no insurance, (thank God I had all my tests done before now), no way to get the expensive treatment I so desperatly need, only to find out I am not to depressed to start. I am stage 3 bridgeing fibrosis with early cirrhosis, my viral load is 450,000 and thank God the rest of my organs are ok. I also have a second liver disease that is not even in the SSDI blue book, its called STEATOHEPATITIS (fatty liver syndrome) this disease will progress you to cirrhosis quicker than HEP C alone. I lost my husband to AIDS back in 1996, and I could not have children so I have to fight this by myself along with injecting insulin (insulin resistant now from HEP C). My spine is so bad I take morphine just to stay out of bed. Please join me in this fight for our medical care and future treatments. Join me in the fight-Please visit www.hepcchallenge.org and write your senators and congressman and please send an email to kenf@atdn.org (Ken Fornataro) and let him know we are out there and not going to stand by and let his group get all the funding that rightfully belongs to us. Also send your email to the director at hepcchallenge.or and let them know your story. OUR CRIES NEED TO BE HEARD.
Thank you all for listening and supporting me in this community. Let us get the treatment and support we so desperatly need buy being real AMERICANS and joining together to fight for our equal rights to government money.
deleted_user
That very same discussion was brought up at my last meeting at the Hospital, I wrote down that site as well. Your so right about this, Respects to you sister!!
deleted_user
I'm pretty angry right now after reading about what the Aids people say about us...I'll not type what I'm thinking cuz I would say something that I would reget or maybe not regret...Tatt.. now what?? how do we get this going???
deleted_user
I AGREE WITH THIS, WE NEED TO START SOMETHING. I WILL GET MY FRIENDS TO WRITE ALSO WE NEED TO COME UP WITH A PALN. EVERYONE HERE AT THIS SITE, SHOULD WRITE AND ALSO THEIR STATE OFFICIALS.
deleted_user
Hey sister, I'd have to get a hold of Darla befor next months meeting. I have already e-mailed her,If you like our meetings are once a month, Care to join???????? Yes thats means ya have to drive your ass over Donner Pass!!! Bring those ugly-ass dogs of your and stay the night!!! The meetings are 2 hrs long.If you showed up they would probably be 4hrs long. Cause ya never shut-up!!! LOL,LOL, Love you!!!
deleted_user
I can't believe the nerve of Mr. Fornataro. I feel like the rookie here but ever since I was diagnosed I have felt the stigma. When my girlfriend went to get tested her doctor told her that she better get tested for AIDS because that usually comes with HCV. I was devastated. I couldn't believe someone in the medical community could have said something so ignorant. I'm sure that is why she left. She didn't trust me enough to know that I got this disease because of something entirely different. Does anyone know a site where I can get a hold of a template Hep C letter to send to my congressman? I suck at writing those kinds of letters. But I will send as many as it takes for us to be heard. I do feel sorry for anyone that has to deal with AIDS but I also feel like I am stuck with that stigma and I don't deserve it. Anyway...... that's my 2 cents.
deleted_user
Hey Big Brother Bob, Befor you write your congressman, do alittle research on which one is a supporter to our needs brother.Im sure there's all kind of templates out there for ya.Im not PC smart on that crap, I type and print but my printer is out of ink,aint got 30 bucks for more yet, But see who is in your area,Try the hosptial first!!!!!!! Lots of info and meetings there . My brother.
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
