pixie
Patient
Last on 3 weeks ago.
126 points.
Guru

pixie

founder of HepC Nomads 17 months ago

Tell us about your experience with/connection with Hepatitis C

“Diagnosed with HepC in 2000, after a transfusion in 1980, I cleared the virus Geno 1b with 48 weeks treatment. I went on to set up a online forum called the HepC nomads. ”

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Results 1 - 10

  • raybell52

    11 months ago

  • Brad

    I hate to find new  friends like this, which means we all have HEPC or even worse. I do appreciate those who keep going with their treatments. Unfortunately, I can't have treatment and was refused by 2 Doctors due to complications of HEPC for years (I didn't know nor did they) of having the virus and then it (HEPC) affecting my heart (7 heart attacks now)

    I look for no pity, but want to inform a lot of those infected is that I and others can't have treatment to help or maybe even radicate the HEPC from our bodies and those of you who can have treaments should! Having some hope and treament course is just a pipe dream for me. I died a little over a year ago from my last heart attack and the Dr's did not see my DNR order so they brought me back. When I and others die, they will state "due to heart condition" not from HEPC like it should say. The medical community wants only the posivtive outcomes shown and not to deal with those whom they cannot help or treat.

    Good Luck

    Brad

    11 months ago

  • pixie

    he site is located at http://hepcnomads.co.uk/phpBB3/index.php.
    For anyone currently on anti-HCV medication there is a wealth of
    support and knowledge available from the Forum and its dedicated
    volunteer membership, which at the last count included three doctors
    (two of whom are practising HCV Consultants), one dentist and and at
    least two Hepatitis C nurses.

    The Hep C Nomads Forum is a free
    internet resource for those infected with, or affected by, the
    Hepatitis C virus. The sobering statistics for the very low diagnosis
    rates (cite stats.The Nomads have their own publicity poster which can
    be feely printed

    Hepatitis C knows no boundaries and cuts
    across all social, economic and racial groups yet the discovery that
    you may be affected can be a frightening and lonely experience. In
    addition to discussions of conventional treatment it features a 24 hour
    chat room, a 'Herb Garden' for those interested in or going down
    alternative treatment paths, nutritional advice and a concise reference
    section featuring the results of the latest accredited scientific
    studies.

    The Forum is free, unmoderated and open to all
    comers.The HepC Nomads Forum promotes individual support groups
    worldwide and could help anyone seeking more information on the issues
    surrounding the condition make contact with people near them, and
    welcomes submissions from all groups and organisations active in area
    of support and awareness. In addition the Forum has occasional guest
    speakers - including doctors and other experts- who will answer
    specific questions from members.) against the large demographic likely
    to be unknowingly affected illustrate the vital importance of the aim
    of the Forum, and its members, in combating stigma and ignorance
    related to HCV infection, transmission and treatments.

    The
    Forum continues to actively organise social events serving the dual
    purpose of uniting those affected in a positive and caring environment
    whilst continuing to spread the message that HCV is a serious,
    treatable, condition which many people at large remain unaware
    of.Perhaps the most significant public event organised through the
    Nomads was the 'Wedding of the Year';The Times OnlineIn addition during
    the summer of 2008 a series of 'heppers' picnics were arranged across
    the UK bringing those affected together and to spread awareness to the
    wider general public through the distribution of information, leaflets
    and free hugs. There is even an Hep C Singles area for those seeking
    partnership or romance.Despite originating in the UK the Forum
    continues to attract members from a range of English speaking countries
    worldwide and its global membership continues to grow daily. It is
    necessary to register on-line to join the Hep C Nomads which can be
    done in full anonymity depending on individual choice.

    Members
    are known by their nick names and generally upload avatar images to
    personalise their space in the domain. Founded on the second of
    December 2007 by Hep C veterans John and Chrissie Semple and working in
    association with both the British Liver Trust and the Hep C Trust (UK)

    http://hepcnomads.co.uk/phpBB3/index.php

    13 months ago

  • Jim

    Hi Pixie

    I will have to update my bio, I was diagnosed with HepC in 1998, I went thru 48 months of combo treatment- three shots per week and 6 pills each day, that was hell. I was clear for a few months, then relapsed four months after finishing tx.

    I waited till 2005 to under go treatment again, this time I did 60 weeks on the peglated tx and have been clear ever since.

    I do have a lot of health issues I never did before under going tx. I don't know if that is just because I'm getting older or because of the treatment.

    I was in a motorcycle crash in 1978, I had three broken rib's and lacerated liver, a shattered jaw and severed my lower lip, ruptured three disc in my back and was given blood.

    In 1997 I started feeling tired all the time, that's when my Dr. ran test and found I had HepC. Finding the right liver Dr. seems to be the biggest challenge. I worked for the state when I started TX, after 17 weeks I went on medical leave, then my position was eliminated, now I must deal with unemployment at age 58, it seems that as soon as a employer finds out I have been on medical leave from a job, I'm out.

    So that's where I'm at today. I deal with depression and a lot of other problems, never was into booze or dope much, I sort of wish I did have some escape now. But so be it.

    When I get down I play my guitar or take my grandson fishing, that's my RX .

    14 months ago

  • Zachariah

    thank you for the friend request i am all new to all of this. congrats on clearing the virus.

    14 months ago

  • easth

    thanks friend! :)

    15 months ago

  • Greg

    Thanks!

    16 months ago

  • pip

    hi i'm new here but just wanted to say well done you:)

    pepy

    16 months ago

  • patricia

    hello Pixie , I am new to this site, thanks for asking me to be a friend , all the best patricia

    16 months ago

  • Terrie

    Hey girl, Just wanted to say hi and that I so enjoyed out visit. I"m been crazy busy, but would love to meet up again when you have the time. Take care, Terrie

    17 months ago