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About Hepatitis C
In this section you or a loved one can find out more about medical treatments and alternative therapies for hepatitis C virus (HCV). Perhaps most importantly, it emphasizes the importance of having a network of people in your life (and online) who are informed, supportive and understanding. It also includes practical suggestions that may make it easier to live well with this condition.
What is hepatitis C?top
Hepatitis is an inflammation of the liver – an infectious health condition caused by several types of hepatitis viruses. The three most common in Canada are hepatitis A, hepatitis B and hepatitis C, generally considered to be the most serious.
If a hepatitis C infection isn’t cleared by the immune system within months after acquiring it, it becomes ‘chronic’, causing inflammation and scarring/cirrhosis, making it harder for the liver to do its job – fighting infection, aiding digestion and filtering toxins from the blood. Over time, people with HCV can become very sick, and some may eventually need a liver transplant.
However, most people with chronic hepatitis C live very long periods with few to no symptoms. In fact, often only routine medical tests show liver damage – sometimes decades after the initial hepatitis C infection.
In Canada hepatitis C is considered an uncommon disease. In 2007, it affected an estimated 1% of Canadians (245,000 people), and approximately 8000 new infections occur every year. HCV infection is more prevalent among men than women in this country, and more common in men aged 40-59 and women aged 25-29.
Around the world, about 160 million people have chronic hepatitis C, 3-4 million new cases are seen every year, and over 350,000 people a year die from the consequences of hepatitis C. The prevalence of chronic hepatitis C infection in different parts of the world:
- Middle East: 16 million (47 in every 100 people)
- Africa: 28.1 million (32 in every 100 people)
- Europe: 17.5 million (23 in every 100 people)
- Asia: 83 million (21 in every 100 people)
- Americas: 14 million (15 in every 100 people)
- Australia and Oceania: 400 thousand (12 in every 100 people)
Because symptoms from a hepatitis C infection often only appear years to decades after the virus has been transmitted, many people are not aware of their infection, so HCV is often unknowingly spread from one person to another. It is estimated that the number of people worldwide who have a chronic HCV infection may actually exceed 200 million. In 2007, an estimated 50,000 (21%) of the 242,251 Canadians living with hepatitis C were unaware they even had any viral infection, let alone a serious, communicable one.
There are six types of hepatitis C virus, which all have different genotypes (the genetic structure or makeup of living organisms). The six different genotypes are numbered in the order of their discovery, and each has many subtypes, lettered in the order they were discovered. It is important to find out which hepatitis C genotype you have, because it determines the type and the length of treatment that is best for you, and helps predict the likelihood of effectively treating HCV. In Canada, the genotype subtype 1a (which 48% of HCV-infected people have) is the most common. Most patients with HCV are found to have only one principal genotype, rather than multiple genotypes. Once identified, it need not be tested again. Genotypes do not change over time.
Your hepatitis C genotype does not determine disease progression but does help determine the type and length of treatment, and also helps predict the likelihood of effectively treating your HCV.
Genotype generally has not been found to play a role in the progression of liver disease caused by HCV. Rather, for doctors, knowing their patient’s hepatitis C genotype is helpful in making a drug-treatment recommendation, as some therapies fight certain HCV genotypes better than others.
How is hepatitis C transmitted?top
Hepatitis C is spread by HCV-infected blood getting into the bloodstream of another person (blood-to-blood contact). This usually happens through punctures of the skin or scrapes and tears in the delicate tissue lining the nose and mouth.
Ways the hepatitis C virus can be transmitted include:
Today, most people become infected with the hepatitis C virus by sharing needles or other equipment to inject drugs. This tends to create a stigma for those living with the virus.
- Sharing contaminated needles, spoons, pipes, alcohol swabs, tourniquets, and filters to inject drugs: injecting yourself with just one contaminated needle may be enough to become infected.
- Sharing straws to snort drugs, such as cocaine: cocaine can damage the inside of the nose, causing it to bleed. It is then possible to inhale contaminated blood and become infected.
- Getting a blood transfusion or an organ transplant that was not screened for hepatitis C, or re-using medical equipment that should only be used once: in Canada, screening of donated blood and organs for hepatitis C started in 1990. In some countries, blood wasn’t screened for hepatitis C until more recently. Medical equipment (e.g. needles) used on other patients and not cleaned properly before being used again can also spread hepatitis C. If you have a blood transfusion or medical or dental treatment overseas where medical equipment is not sterilized properly, you may become infected with hepatitis C.
- Re-using tools for activities that break the skin, such as tattooing, body piercing, acupuncture and electrolysis. In tattooing, re-using needles, ink and inkpots can spread hepatitis C. If you use an at-home tattoo kit, do not share the needles or pots.
- Sharing or borrowing personal items that might have blood on them, such as razors, nail clippers and toothbrushes.
- During pregnancy or childbirth a woman who has hepatitis C can pass the virus to her baby. About 4 of every 100 infants born to mothers with hepatitis C become infected with the virus. The risk becomes greater if the mother has both HIV infection and hepatitis C.
- Having unprotected sex where blood could be present: for example, during anal sex; rough sex; sex during a woman’s period or when one person has open sores. The risk of transmission from sexual contact is believed to be low. The risk of transmission through sex may be higher among men who have sex with men. The risk also increases for those who have multiple sex partners or who engage in rough sex, and if there are genital sores or ulcers from a sexually transmitted infection or if you are infected with HIV.
Hepatitis C virus cannot be transmitted through regular daily interactions.
You cannot get hepatitis C from:
- Shaking hands or holding hands with an infected person
- Being coughed or sneezed on by an infected person
- Hugging an infected person
- Sharing spoons, forks, and other eating utensils
- Mosquitoes or other insects
- Drinking water or eating food
- Toilet seats
- From the breast milk of a mother with HCV. But if her nipples and/or surrounding areola are cracked and bleeding, she should temporarily stop nursing.
Hepatitis C is a hardy virus that can survive outside the body at room temperature, on surfaces, for between 16 hours and 4 days. This means that even taking in dried blood from an infected person can transmit the virus. Any blood spills – dry or wet – should be cleaned using a solution of 1 part household bleach to 10 parts water. Gloves should be worn when cleaning up blood spills.
Some people are at increased risk for hepatitis C, including:
Current injection drug users
- This is the most common way hepatitis C virus is spread today.
- Past injection drug users, including those who injected only one time or many years ago
Recipients of donated blood, blood products, and organs
- Once a common means of transmission but now rare in Canada since blood-screening became available in 1990.
- People with clotting problems who received a blood product made before 1990
Hemodialysis patients or persons who spent many years on dialysis for kidney failure
- Hepatitis C can be transmitted through dialysis equipment that is not properly disposed of or sterilized.
People who received body piercing, tattoos, acupuncture or electrolysis, or even possibly manicures/pedicures, done in an unclean environment using equipment not sterilized properly.
- This also includes the sharing of an at-home tattooing or acupuncture kits.
Health care providers injured by needle sticks contaminated by hepatitis C
- There is a small (approximately 1 in 30) risk of getting hepatitis C if your skin is accidentally punctured by a needle used on someone with hepatitis C.
- There is also a small risk of transmission if a splash of infected blood gets in your eyes or mouth.
- Recipients of blood or organs from a donor who tested positive for the hepatitis C virus
- HIV-infected persons
- Babies born to a woman with a hepatitis C infection
Less common risks include:
- Having sexual contact with a person who is infected with the hepatitis C virus
- Sharing personal care items, such as razors or toothbrushes, that may have come in contact with the blood of an infected person
In a minority of people, the immune system, antiviral drugs or a combination of both clear the hepatitis C virus from the bloodstream (within about 6 months of it entering the body), but it is still possible to get HCV again. Though the chances of re-infection are very slim, people who were cured of HCV once are not immune and need to continue to take precautions. Not doing so leaves you somewhat vulnerable to re-infection by the hepatitis C virus, as well as potential infection by other very serious pathogens, like HIV (called co-infection).
The chances of a long, sustained quality of life are diminished with a greater number of infections the body has to fight. And as multiple chronic infections usually require complicated treatments, life can be burdensome in a variety of ways: taking several medications on an exact, complicated daily schedule, and managing a greater number of side effects, some of which could be unpleasant or serious. Even if you continue to engage in activities that put you at high risk of HCV and HIV infection, it’s absolutely worth it to reduce possible harm and protect yourself by not sharing drug injection equipment and by using condoms.
What are the effects of hepatitis C?top
About the liver
This hard-working organ – roughly the size of a football – rests mainly in the upper abdomen, just to the right of the stomach. It serves as an important processing centre for the entire body.
As blood passes through it, many toxins like ammonia and alcohol are filtered out so they can’t damage the body or damage it less than if a larger amount of toxin went into full blood circulation. The liver also manufactures important substances such as bile so food can be digested and absorbed. Last but not least, it stores beneficial substances like vitamins and glucose for later use.
Support means everythingtop
No man is an island: in other words, it is not helpful to try to cope with living with hepatitis C all by yourself. Your friends and family can help, along with your team of health care providers.
Living with any chronic disease can make you feel isolated – especially when you have to adapt or change your daily routine, see more doctors more often and learn medical terms. But you don’t need to do it alone.
Most people infected with the hepatitis C virus are surprised to learn they have it, thinking they were never at risk and unable to imagine how they contracted it. Find out how hepatitis C is transmitted here.
At diagnosis and beyond, it is normal to have many questions about your viral infection – where it came from, what it does, what to do about it, and what to expect in the future. For many with hepatitis C, the stigma that can come from having a potentially infectious disease weighs heavily, mentally and emotionally. To take the best possible care of yourself and to deal with stressful thoughts and feelings, it’s essential to get plenty of informed, non-judgmental, compassionate support – both medical and emotional.
Here are some tips and helpful insights we’ve gathered from patients:
Ask those closest to you to learn about your condition. That way they’ll understand your symptoms, or even go with you to your medical appointments. When you have hepatitis C, it’s invaluable to keep the lines of communication open with trusted friends, family and co-workers: they can’t understand what it’s like to live with hepatitis C if you don’t talk openly about it. Lots of people are uninformed, not up-to-date, and have misperceptions about the disease. They can read this or other Web sites for information, (like the patient resource and advocacy sites listed in this Web site) or they can consult reliable sources of medical information in public libraries or community health clinics.
Get their support. Don’t avoid talking to close friends or family about HCV because you’re worried about how they’ll react. Some might be openly supportive right away; some may need to educate themselves before coming around. Remind yourself and others that having a virus is not a moral issue – nor is it a crime. It’s very important to have people you can talk to – don’t pull away from those you care about. Strong, open and honest relationships with select family members and close friends are key to your wellbeing.
Be frank about your hepatitis C with people who need to know. Who you tell about your hepatitis C is a personal decision, but there are some people who should be informed of your status: the person(s) from whom you may have contracted hepatitis C, and anyone you may have inadvertently transmitted it to – family, your spouse, your sexual partners, a health care provider – these people should be told. It’s quite unlikely that these people have hepatitis C too, but they should know they might have been exposed to it so they can be tested and treated if necessary.
Talk to others who live with or who know people living with hepatitis C. Patient support groups provide an excellent forum – a great way to get information and share experiences and feelings with people who personally understand what you are going through. Ask your health care provider about support groups in your area. You may also find support groups on the Internet.
If you think you may have been exposed to the hepatitis C virus, see your family doctor, a clinic or a general practitioner. Early diagnosis and treatment of chronic hepatitis C can help to prevent or postpone liver damage. If you are diagnosed with HCV, your health care provider may recommend you see a specialist like a hepatologist, gastroenterologist, or a doctor who specializes in infectious diseases.
Hepatitis C can affect you emotionally. Coming to terms with an HCV diagnosis and undergoing treatment for HCV-related illness could make you feel depressed. If you are experiencing persistent depression because of hepatitis C, talk to your doctor.
Anyone you may have exposed to hepatitis C
To the extent it’s possible, you should tell anyone you may have exposed to hepatitis C about your infection. This includes anyone you’ve shared a needle or cocaine straw with, or anyone you had or are having sex with or without a condom.
It’s important to do this as soon as possible, so these people can get tested too. If they are positive, they can get medical care right away and take extra care to avoid passing the virus on to others.
Telling others about an infectious medical condition (‘disclosing’) is understandably difficult. No one wants to be the bearer of potentially bad or scary news. You may also worry that others, once they know, will treat you differently, reject you or even blame you for giving them the infection. These fears are normal, but disclosure is a very important decision that should be given a great deal of thought.
If you can’t bring yourself to tell someone that you may have exposed him or her to hepatitis C, ask your nurse or doctor if they can help. They can sometimes make an anonymous call on your behalf to advise another person to get tested.
Whether it is best to tell your insurance company you have hepatitis C depends on your individual situation. In general, any contracts you have in which health is a factor are likely to require that you inform your insurer of any medical conditions. If your policy is renewed on an annual basis, such as private medical insurance, you may need to inform them about your HCV status or risk your contract automatically becoming void. Any information you provide forms part of a legal contract. If the information is inaccurate or fraudulent then it may render the agreement invalid. This could, of course, have a very negative effect on your life.
Always read the small print on current or new insurance policies before disclosing your HCV status or entering into a new contractual agreement. You can also contact the insurance company anonymously and ask them about what happens in the event of disclosure.
If your health insurance is part of your employment contract, you will need to find out if you have to disclose and/or make any necessary adjustments to your policy via your employer or if you can do it directly with the insurer.
People who may come in contact with your blood
Although there is no legal obligation to do so, it is ethical and appropriate to tell people who may come in contact with even small amounts of your blood, such as your dentist, acupuncturist, esthetician, etc., about your hepatitis C. This will allow them to take any extra precautions they deem necessary. Alternatively, you could ask them to wear latex gloves, be extra careful with sharp instruments, etc., as a matter of good procedure. In many settings today it is considered normal and professional to take such precautions: your request would not be out of place. Barrier protection works both ways – it could equally be the case that you need protection from their blood.
You have no obligation to inform your employer of a hepatitis C infection. If you need to take time off work, you do not have to state that HCV symptoms or treatment are the reasons why – you can easily and truthfully describe specific symptoms (such as fatigue, muscle aches, depression) or request time off for a medical appointment. Should your company require documentation for your medical absences, your doctor may be willing and able to vouch for the necessity of your absences without disclosing the cause.
It’s also important to know that people should not be excluded from work, school, play, childcare or other settings because they have hepatitis C. There is no evidence that people can get hepatitis C from food-handlers, teachers or other service providers without blood-to-blood contact.
Choose the right time and place
Tell someone about your hepatitis C at a time when you can discuss the issue thoroughly, you can answer their questions about HCV and what it means for both of you. Do not bring it up just before or during an intimate moment. Choose a private location so others won’t hear personal information or interrupt your talk. A safe place lets you and the other person share your thoughts and emotions openly.
Opening the conversation
Many people aren’t familiar with hepatitis C – there can be a lot of fear and misunderstanding about it. Keep this in mind when telling someone. They will need time to adjust to the news.
It can also help to first gather facts and logic to share with the other person. Everyone involved should understand that having an infection is not a moral failing, and that blaming people who have contracted hepatitis C is as unreasonable as it is unkind. HCV affects millions of people around the world, doing what an infectious microbe does. You did not invent it; you did not want it; you don’t want others to have it either. It’s also important to know that, in the case of infectious diseases, it is impossible to tell who spread what to whom – so blame is pointless and counterproductive. Time and energy are much better spent being honest, and protecting and caring for each other going forward than in pointing fingers.
Having hepatitis C can be an exhausting and often difficult situation to face. It is a very personal illness that affects everybody in different ways. However, there are many different things that can be done to help you have a more positive experience living with it, keep your health longer and protect the health of others as well.
The most appropriate diet for you depends on factors such as your age, your weight, the extent of your liver damage (if any), and your symptoms (if any). It is well worth discussing these factors with a dietitian. Your health care provider should be able to give you a referral. Most people with chronic hepatitis C will be advised to just eat a healthy, balanced diet and protect their liver.
Being overweight can lead to a condition called fatty liver – a build-up of fat in the liver that can lead to cirrhosis. A combination of diet and exercise should help you get to and/or maintain a healthy weight. Exercise is especially important for HCV, because not only is it an excellent means of weight control, it also increases/maintains body strength. When liver disease progresses, it leads to loss of muscle mass and tone, so it’s even more important to maintain physical activity to avoid or to counter potential muscle loss.
For extra motivation, instruction and support on diet and fitness, talk to a dietitian about meal planning, and to your doctor about a suitable exercise plan that could work for you.
Stay hydrated. Drink about 8-10 glasses of water a day to give your body all the fluid it needs. Try having a glass along with each meal, and drink a few more glasses in between meals.
Everyone has some degree of stress, but living with a chronic disease can increase it. Many patients with hepatitis C tend to be very anxious about their disease and the treatment. The first step in easing stress is identifying the triggers – then developing relaxation and coping skills to improve your overall wellbeing and give you a greater sense of control over your hepatitis.
Emotional stress can also be physically exhausting. The body is continuously fighting off infection, and responding to tension, irritability, fatigue, worry or depression. To be told to eliminate all stress from your life is unrealistic and can even induce more anxiety, so we are not suggesting that here. But there are definitely some things you can do to reduce some of your extra tension. Exercise is a fantastic stress-reliever and ‘feel-good’ hormone-booster. Some people benefit from yoga, progressive relaxation techniques, improved sleep habits, acupuncture, cognitive-behavioural psychotherapy, reduction of work hours when feasible, and devoting more time to hobbies or healthy recreational pursuits. Never forget the powerfully stress-reducing benefit of spending more time with caring people you like, and with whom you feel relaxed and comfortable. Social support is invaluable. Besides talking to your doctor, you may want to talk to a counselor or medical social worker, or consider joining a hepatitis C support group where you can share your experiences with like-minded people.
Since hepatitis C requires blood-to-blood contact to spread to others, it is difficult to pass on to someone else unless you engage in any of the risky activities described earlier. Still, it is kinder and wiser to do whatever you can to protect others. You may be protecting yourself as well from any new blood-borne infections (like HIV) or even new types of the viruses you already have.
Additional chronic viral infections could complicate or reduce your range of options for your HCV treatment. Take these precautions to reduce the risk of transmission:
- Cover any wounds you may have.
- Don’t share household or bathroom items or utensils that may possibly be contaminated with even a tiny amount of blood.
- Don’t donate blood or semen.
- Don’t donate organs or carry an organ donor card.
- Advise all professionals who may have direct contact with your blood that you have the virus. (Again, this could protect you, them and/or your baby.)
- Don’t share any injecting equipment such as needles, syringes, etc.
Always use condoms when having sex.
- If you do not, make sure your partner knows beforehand about your HCV infection so he or she can make an informed decision about how to have sex with you at a risk level they feel comfortable with.
- Hepatitis C can be passed on during unprotected anal sex with men or with women. The risk of transmission is higher when you are the receptive partner and very high when you are also HIV-positive.
- The risk of passing on the hepatitis C virus during vaginal sex is small, but is reduced even further by using condoms.
Remember, the hepatitis C virus can survive outside the body for up to 4 days, and exposure to dried blood can also lead to infection. Any blood spills – dry or wet – should be cleaned promptly.
There is no vaccine available to protect against hepatitis C, so these precautions are the best thing you can do.
There are drug treatments that may get rid of HCV, but they aren’t for everyone. Assessing the progression of liver disease is critical in first evaluating if a patient will need drug treatment or whether a ‘watch and wait’ approach is better.
The decision to treat with drugs and the drug treatment timing are dependent on a number of factors, such as:
- How much of the virus is in your body (your viral load)
- The genotype(s) or subtype(s) of hepatitis C you have
- The amount of liver damage present, such as cirrhosis
- What other health conditions you have
- The response to any previous treatments for hepatitis C
Drug treatment is also not always an option as the medications available have serious side effects, and do not work for everyone. The only ‘absolute contraindication’ (meaning, never, without exception) to HCV drug therapy treatment is pregnancy.
Doctors specializing in hepatitis C generally don’t treat it with drugs unless it becomes chronic. Drug treatment is considered for patients with elevated ALT liver enzyme levels (1.5 times the upper-normal limit) for a minimum of 3 months and confirmation from a biopsy that there is inflammation or fibrosis present in the liver, along with other considerations. If your doctor recommends no treatment, follow-up blood tests will monitor you for liver problems.
The drug treatment of hepatitis C is a developing area of medicine. Some newer drugs have been introduced in the last few years that appear promising and research is still ongoing. Scientists are always working to develop more effective treatments with fewer side effects. The specialist(s) who know your case can give you more specific information.
If the liver has been severely damaged, a liver transplant may be necessary, replacing the damaged liver with a healthy one. Most transplanted livers come from deceased donors, though a small number come from people who donate a portion of their livers. A liver transplant is not a cure, however – treatment with antiviral drugs usually continues afterwards, as hepatitis C infection is likely to affect the new liver as it did the old. A successful transplantation can significantly lengthen the time an HCV-infected person has before liver disease develops again.
Today up to 35% of all transplantations are done in patients with hepatitis C, and about 400 liver transplants are performed in Canada every year.
When you’re living with a chronic disease like hepatitis C, it’s normal to want to explore any treatment options to relieve your symptoms and improve your quality of life. Standard hepatitis C treatment has come a long way towards curing the disease. However, the drug treatments don’t always work and they can have side effects, so some patients with hepatitis C look into complementary and alternative therapies as well. There is limited research on these therapies – no study so far has proven any alternative remedy both safe and effective for treating the condition as a whole (i.e., bringing about disease remission). It’s difficult to draw any conclusions from the research because studies on alternative remedies are typically not as rigorous or numerous as those used to test medications.
If you want to try an alternative therapy, talk to your doctor first to make sure it would be safe for you, considering the complexities of your particular medical condition.
Review all your medications with your doctor, including any over-the-counter products you take, and pain relief medication. Depending on the degree of liver damage, your medications or their doses may need to be adjusted. Likewise for any vitamins or ‘all-natural’ supplements you take, which can even harm a healthy liver in excessive doses or dangerously alter the intended effects of your medications. Also review any weight-loss or muscle-building supplements with your doctor. You can talk to your pharmacist about your condition and the medications and supplements you’re taking. Their advice can supplement your doctor’s, as they know which substances are hard on the liver, and about unwanted effects of taking certain drugs and supplements at the same time.
The single most important substance to avoid is alcohol. Try hard to eliminate or radically minimize your alcohol consumption. It is a very attainable lifestyle change if you make it a personal goal and give yourself a timeline. As alcohol is so ubiquitous in many social situations, be sure to let friends and family know that you’re serious and determined to change your habits.
You must also avoid or limit your exposure to toxic liquids and fumes like solvents (e.g. paint thinner), chemical household cleansers, and gardening pesticides and herbicides. These can further damage your liver. If you must use chemicals, cover your skin, wear gloves and a mask and keep the area well ventilated.
Please note that the information on this Web site should not be used as a substitute for seeking medical advice or treatment from a physician. You should not use this information to diagnose or treat a medical condition or health problem. Speak to your health care provider if you have any questions about your medical condition, symptoms or treatment options.