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Jane discovered she had hep C in 1998, whilst having a problem with her gall bladder investigated. She had no idea that she was going to be tested and so not only was it a huge shock it was made even worse by the fact that she was totally unprepared. “The doctor was very offhand, which I also found difficult but I realise now this was probably because he didn’t know much about hepatitis C either, so the first thing I did was to insist on seeing a specialist and try and find out as much as I could.
The more I discovered, the more the diagnosis actually turned into a relief, finally making sense of so many of the symptoms and general ill health I had been experiencing over 25 years”. This included the fact that her gall bladder problems and also her diabetes were most probably caused by hepatitis C … “It had been so confusing…never understanding why over the years I felt like I had so little energy, with bouts of feeling so rough I would sleep for days, but never felt replenished”.
She found the search for information about hepatitis C a pretty dispiriting experience that left most many questions unanswered - hours of trawling the internet and coming across very conflicting information was in fact the fuel that started a journey to become involved in trying to change this for other people who had hepatitis C.
Treatment is contraindicated for Jane (due to having a very high viral load, genotype 1b, a history of family thyroid disease and diabetes). When the doctor discussed it with her, he said with this combination of factors there would be only around a 25% chance of success and the potential for irreversible side effects. Jane was actually relieved about this because deep down she didn’t feel treatment was right for her.
Consequently she has tried many different alternative therapies and treatments to help with the symptoms; Chinese medicine, Qi Gong, Homeopathy, Ayurvedic medicine, different diets and herbs and vitamins, healing and meditation, in a gradual process of finding what helps the hepatitis C generally and what helps particular symptoms as and when they come.
Whilst living in America she saw a doctor of Chinese medicine who specialised in hepatitis C. He prescribed Chinese herbs which quickly helped some of her symptoms, particularly the night sweats. On moving back to England she continued Chinese herbs and acupuncture with John Tindall (Yuan Clinic) on the American Chinese doctor’s recommendation, and also found his treatment really helpful. She started meeting other people with hepatitis C through the clinic and the Qi Gong classes.“This made all the difference, you feel like you are not mad after all as you meet more and more people with the same experience and together you can generate positivity for life rather than focus on sickness”.
Through John she met an extraordinary Balinese energy master and she has been focussing on doing his energy practice ever since. Since starting the practice in 2001 Jane has found it has really changed things “It helps on so many levels, my perspective and understanding of life, feeling much less symptomatic, and not worrying if I don’t feel well, so much more energy and strength... It’s a deep cleaning process...I feel like I have come alive, life is an extraordinary, mysterious journey… and feeling sick or well is not the main event”.
Having hepatitis C has been an enormous learning curve for Jane, which turned into a hugely positive thing. In fact, she feels that having hepatitis C actually enhanced her life as it led her in directions she may have never otherwise have gone and which ultimately led her to discover what is really important… “It was a door to discovering how to live!”
Jane worked at the Hepatitis C Trust from 2001 to 2007 as Project Manager