Prior to the development of viral inactivation procedures in the mid-1980s, people with haemophilia who had previously received large pool plasma-derived factor concentrates were infected with the Hepatitis C virus (HCV). A considerable number of these patients were also infected with human immunodeficiency virus (HIV). Before the introduction of highly active antiretroviral treatment (HAART) in the mid-1990s, HIV was considered to be the most significant viral infection in co-infected patients and the importance of HCV infection was underplayed. However, since HIV infection has been so effectively controlled by HAART treatment, there has been a heightened awareness of the potentially life-threatening effects of chronic HCV infection in co-infected patients, in particular, the progression to cirrhosis and end-stage liver failure and the development of hepatocellular carcinoma.
Living with HIV
The implications and impact of living with HIV infection in people with haemophilia and their families have been devastating. HIV gave rise to many new fears and problems, just at a time when life for people with haemophilia appeared to be better than it had been in the days before effective treatment was available. The Society have put in place a range of support services and programmes for people who were infected and currently living with HIV, including a counselling and outreach programme to address the specific needs of our members, their partners and family members. We aim to achieve this by:
Offering support before, during and after antiviral treatment.
Offering regular update meetings on HIV treatments.
Offering support, education and information to family members in relation to their concerns relating to HIV.
Facilitating networking between members.
Offering support during periods of illness.
Offering home visits.
Offering hospital visits.
Acting as a resource for you and your family.
Keeping you informed of your entitlements under the Health Amendment Act (HAA) Card, and the Hepatitis C Insurance Scheme.
Organise specific conferences for members with HIV.
There are lots of things you can do to look after your physical and mental health and general well being. Leading a healthy lifestyle is a good start. This includes getting enough sleep, eating a healthy diet, exercising, not smoking and drinking sensible amounts of alcohol. Attending your clinic appointments is very important, as regular check-ups are vital and a very important part of staying well. Looking after your emotional health is also very important. It is good to have somebody that you trust, who you can talk to about your feelings, and to discuss any problems you might have. Living with HIV can be hard at times, so don’t be afraid to ask for help.
If you would like to talk to somebody about any concerns you may have please contact the office in total confidence on 01 657 9900.
Living with Hepatitis C
The Hepatitis C virus was identified in 1989. It is a viral agent. It is associated with both acute and chronic liver disease. In many cases, people infected with Hepatitis C may not become ill. However, some people develop jaundice. When liver inflammation persists for longer than 6 months, the illness is called chronic Hepatitis C. Symptoms tend to occur in cycles. You may have periods when you feel fine and then go through weeks when you feel absolutely exhausted.
This is the most common symptom reported by persons living with Hepatitis C. It ranges from mild to debilitating fatigue. It is important to state that the severity of fatigue is not related to the severity of the illness. The temptation on days when you don’t feel tired is to make up for lost time. Overdoing things and forcing yourself is not a good idea.
Pains and Aches
Many persons with Hepatitis C feel a variety of aches and pains. Chronic pain is itself a great stress.
Stressful life events like a diagnosis of Hepatitis C make life very difficult. Some people cope and find ways to get through the shock but others find it difficult to cope with it and this can lead to depression. This should not be ignored as it can take a terrible toll on a person and everyone else in the family. It is important to talk to your children and explain how you feel and reassure them that you are not angry with them.
Living with Hepatitis C changes your life and personal needs vary greatly. Information and education are vital to helping you understand the illness and improve your quality of life. Counselling services can provide both practical and emotional support.
How to cope:
Understand your history
It is helpful to get your own medical history straight. Understanding medical terms and test results can be confusing. Don’t be afraid to ask questions. The more you understand your condition the more you will feel in control.
Respect your emotions
It is not easy living with Hepatitis C. Anger, sadness and fear drain our energy. We need to find appropriate outlets for these feelings.
Learn to listen to your body
Pay attention when you feel tired. Don’t push yourself through the tiredness. Rest as often as you need without feeling guilty.
The psychological dimensions of coping with Hepatitis C is now well recognised. Set aside time to talk to a skilled counsellor. These sessions will help you take stock and focus on your needs. You will learn how to talk openly and honestly, instead of storing up your worries.
Significant progress in the understanding and treatments of Hepatitis C has been made over the years. Keep yourself informed of developments. It will help you feel hopeful and in control.
Stay involved in your life
Don’t let Hepatitis C define who you are. Don’t let it engulf your life. Learn to relax. There are many good books, tapes and courses available. Pace yourself. Don’t overdo things. Avail of the support services, involve your family and friends and don’t be afraid to ask for help.
Please click on the following links where you will find excellent information booklets on Living with Hepatitis C published by the Consultative Council on Hepatitis C:
Living with Hepatitis C
Counselling Services for Person with Hepatitis C
Living Positively with Hepatitis C
Relationship Issues and Hepatitis C
A Guide to Liver Transplantation