In 1991, at the age of 47, I was diagnosed with a chronic, progressive disease. As one who has always feared doctors, it was my worst nightmare come true. I had hepatitis C virus (HCV). Because this disease was first identified in 1989, the doctors didn't know too much about it. After my first liver biopsy, which showed cirrhosis, I started treatment. The medications didn't work. I asked my physician what was going to happen to me. He answered, "This is too new to tell. I just don't know." Can you imagine how terrifying it is to hear an answer like that? Aren't we all used to going to the doctor, getting a prescription and getting better?
The next couple of years were absolutely torturous. I didn't sleep well, I lost 30 pounds, I developed panic attacks. I was sure that I would not see my daughters married or ever get to meet any grandchildren who may come later. On a daily basis, my poor husband dealt with a wife who was moody, depressed, terrified, and didn't even have the energy to cook a meal. All the joy was gone. The only thing I was able to do was go to work. As a school teacher, I credit those little first graders with helping me get through the scariest time of my life.
In 1995 my husband, Dennis, bought me a computer for Mother's Day. It opened up a whole new world for me. I was able to read about hepatitis C virus and actually meet people on-line who had the disease. Up until then I didn't know anyone who was personally affected with HCV.
When I began a second round of treatment, I was forced to take a disability leave of absence from work. It would not be fair to a group of six year olds to have a teacher who, during one year of therapy, had fatigue, headaches and "brainfog". I planned on returning after treatment was over. However, sometimes, when you're not expecting it, life sends you in another direction. While on leave, I spent many hours on the computer. There are newsgroups, email lists and on-line support groups for almost anything you can imagine. I discovered that in trying to help others, I became stronger. It wasn't so frightening anymore. I truly believe that reaching out a hand and lending a sympathetic ear benefits both the giver and the receiver. There is no better feeling than listening to a newly diagnosed, very frightened patient, and then hearing the relief in their voice when I am able to tell them that my biopsy showed cirrhosis and I am still busy doing my life many years later. Most HCV patients are diagnosed years before they are at risk for developing severe liver damage. My life story has given many others a reason for hope, and has taken away their terror.
One of the people I helped early on is a woman I met first on the internet. She too had been diagnosed with cirrhosis and when I met her she said she was starting to "put her affairs in order." She did not expect to live very long. I found that it was a comfort to her to know that I had the same diagnosis and I was still "alive and kicking" six years after diagnosis. I had also experienced treatment and was able to give her some tips on how to help with side effects. We became fast friends. Together we worked in the hepatitis C community and hopefully made a difference in the lives of other patients.
Hepatitis C is an epidemic world-wide. There are an estimated 4 million people in the United States , and 200 million in the world, who are harboring this silent disease, the majority of whom are unaware that they carry this virus. It is usually an asymptomatic disease until the later stages.
Today, as I go forward with the Hepatitis C Association, Inc., we try to educate our communities so that people are aware of the risk factors, understand how the disease is transmitted, learn how to better care for themselves if infected and hopefully stay off the transplant list. We encourage people to become organ donors. Hepatitis C virus is the number one reason for liver transplantation in our country. One of the things I am most excited about is the creation of an educational program for use in substance abuse clinics, counseling centers, departments of health and everywhere there is a need for education.
If you have any of the following risk factors, please ask your physician to test you.
1. Had a blood transfusion before 1992
2. Ever used injectable drugs or snorted cocaine
3. Ever on hemodialysis
4. Received clotting factors before 1987
5. If you are a Viet Nam Era Veteran
6. If you are a Healthcare worker who experienced a needlestick accident
7. If you ever had promiscuous unprotected sex
As odd as this may sound, having hepatitis C is not all bad. By talking about this disease, I have become a better listener. By holding out my hand to those who need it, I have learned that all people deserve a chance for a better life. By pushing myself to my limits physically, I have learned that I can overcome just about anything. Through helping others, I have rediscovered the joy in my life.
Sue Simon, President
Hepatitis C Association
Genentech Patient Assistance for
Pegasys & Copegus | 888-941-3331
Merck Patient Assistance for Victrelis
Peglntron & Rebetol