Living with Hepatitis
Being diagnosed with hepatitis B or hepatitis C is a life changing experience. Despite this people continue to live inspiring lives.
Andrew Cumming
Canada
Canadian father of two, Andrew Cumming, has a simple message to policy makers about the need for Government action to tackle hepatitis B and C. “If I was Prime Minister for one day, I would bring funding levels for research, patient support and drug availability up to levels commensurate with both the level needed and the magnitude of the threat to the population’s health in the future.”
Andrew, who is a haemophiliac, contracted hepatitis C in the late 1980s as a result of a blood transfusion. For many years, Andrew was so sick that he had to end his career. Initial treatment failed to clear the virus, but in 2005 Andrew underwent a liver transplant and in 2006 he successfully eradicated the virus.
Today the biggest challenge he faces is dealing with the anti-rejection drugs that he takes. Andrew is now able to work part-time and enjoys watching his son play baseball. The baseball team is supporting the global World Hepatitis Day campaign by wearing ‘Am I Number 12?’ jerseys.
Criston Barker
Australia
Criston Barker, ex-member of the internationally recognised band Air Supply and 35 year veteran of the Australian music industry, was first diagnosed with hepatitis in 1979.
In the early 1970s, a time when experimenting with drugs was a common part of the rock music lifestyle, Criston found himself exposed to a hard-drinking, hard-living existence that led him straight into the arms of the drug culture. But as a witness to people battling addictions to many substances and even the deaths of other drug users, these were lessons he felt he could not ignore. It wasn’t long before Criston decided to leave the drug life behind, and he continued to lead a successful career spanning the international music industry.
It was some 20 years later before Criston began to feel unwell, and he was diagnosed as having a ‘non-specific’ form of hepatitis. Knowledge of hepatitis and treatment options at this time were limited, and as such he was prescribed a low-fat diet along with a course of vitamin B12, advised to keep alcohol intake to a minimum and to get plenty of rest. Despite a constant feeling of overwhelming tiredness coupled with difficulty concentrating, he continued working - it was life as usual.
It wasn’t until some seven years on, when Criston noticed his feet had swollen to three times their original size that he received the earth-shattering diagnosis - he had hepatitis C. His condition was so advanced that his only chance for survival was a liver transplant. Over the next 12 months, his condition rapidly deteriorated - exhaustion, jaundice and massive fluid build-up from a failing liver left him unable to function, and unwilling to go on.
Fortunately, an organ donor became available and Criston was given a renewed sense of hope. He received a liver transplant but this was complicated by repeated infections and problems with rejection. Eventually, after a 12 week hospital stay, he was able to return home and get back to enjoying life. But there was another hurdle to come. The hepatitis C virus returned and without prompt treatment, he would soon be back on the transplant list.
While there were no guarantees of success, a novel treatment to try and rid his body of the hepatitis C virus was proposed. In 2004, he completed a 12-month course of pegylated interferon, which successfully cleared him of the virus. Four years on, he has been given a 98 percent chance of remaining disease free, and he can now look forward to a long and healthy life. “I’ve won life’s lottery twice now,” says Criston.
Criston’s message is clear- “Hepatitis deserves greater public attention. Having the disease is not a death sentence. It can be managed and in some cases, eliminated altogether.”
Criston Barker is supporting the World Hepatitis Day campaign in Australia with a musical performance at the Sydney launch event.
Bernhard Stein
Germany
Bernhard Stein's positive outlook on life has helped him to manage living with chronic hepatitis B. The 56-year-old father of four was first diagnosed with chronic hepatitis B in 2003, but after doing research, discovered he had actually been HBV positive for 15 years. Various treatments have since kept his viral load under control. After the initial shock of diagnosis, Bernhard has learned to live with the disease. "A very healthy lifestyle (no alcohol), sports, a positive outlook on life, my religious faith, and a new partner gave me back my joy of living. My treatment works very well, and I am glad that most of its cost gets covered by insurance. While I never forget I have hepatitis B, the virus has no power over my life."
Bernhard Stein, Deutschland
Bernhard Steins positive Lebenseinstellung hat ihm geholfen, mit seiner chronischen Hepatitis B zu leben. Im Jahr 2003 hatte der 56jährige vierfache Vater erstmals die Diagnose "chronische Hepatitis B" bekommen. Er stellte einige Nachforschungen an und es stellte sich heraus, dass er bereits seit 15 Jahren HBV-positiv war. Verschiedene Behandlungen haben seitdem seine Virusvermehrung unter Kontrolle gebracht. Nach dem ersten Schock hat Bernhard gelernt, mit der Erkrankung zu leben: "Ein sehr gesunder Lebensstil (kein Alkohol), Sport, eine positive Lebenseinstellung, mein Glaube und eine neue Partnerin haben mir meine Lebensfreude wiedergegeben. Meine Therapie funktioniert sehr gut, und ich bin froh, dass die Versicherung die meisten Kosten übernimmt. Auch wenn ich die Hepatitis B nicht verdränge, hat das Virus keine Macht über mein Leben."
Taslima
Bangladesh
Bangladeshi mother Mrs Taslima was recently diagnosed with chronic hepatitis B, along with her husband and son.
The 19-year-old resident of Savar, Dhaka, commenced treatment this year and to date has had no side effects. Her biggest worry is the cost of the treatment and the number of tests not only she has had to undergo, but also her husband and son.
“My whole family is worried about the long term consequences of the disease affecting all our family members, particularly our only son,” Mrs Taslima said.
“I have found the Liver Foundation of Bangladesh to be very helpful in assisting my family to understand what we need to do to help treat our hepatitis.”
John Semple and Chrissy Davis
United Kingdom
An English couple who were brought together by hepatitis C have decided to marry on World Hepatitis Day. John Semple and Chrissy Davis first met in an online hepatitis discussion forum. Living only 30 miles apart, they decided to meet for coffee to discuss their ongoing treatment. A few months later, their relationship deepened and they moved in together.
Their wedding date, while coincidental, could also be perceived as destiny. They chose to get married on May 19 because they had celebrated a pretend wedding on this date with friends from an online hepatitis forum the previous year. “This year we thought we could do it for real, and of course last year we didn't know World Hepatitis Day was going to be on May 19 this year, so it was spooky and destined,” John said.
Chrissy has now cleared the virus while John has relapsed and started treatment again. John credits Chrissy’s support for surviving his treatment regime. “She gave me the positive edge I lacked, as long as I have Chrissy, I will get through it.”
“Having hepatitis C has certainly changed our lives and finding each other has been the silver lining in the dark cloud that hepatitis C can be,” John said. “We have both learned how tough it can be and that has led us to get involved in raising awareness and offering support to those in need.”
Yang Guangye
China
Yang Guangye, from Zaoyang in China, was diagnosed with hepatitis B in 1987, although still to this day he does not know how he contracted the disease. Married with children, Yang felt that he couldn’t tell his employer about his hepatitis and so kept it a secret. Unfortunately for Yang, once his hepatitis was discovered, he lost his job and still remains out of work.
Unfortunately, while Yang is out of work he is unable to afford his medication and without treatment he does not feel well enough to work. However, Yang feels that the biggest challenge is the lack of awareness around viral hepatitis: “People are frightened when they find out I have hepatitis B, and my family and friends were all so shocked when they found out, although luckily I now have their full support. Raising awareness of the disease is something I feel very strongly about – we need to educate people.”