“For most of us, we have one opportunity to take full advantage of all of the wonderful things that our time here on earth has to offer because in a single moment it can all be taken from us. I am one of those individuals who had it all taken away in an instant, but I am also one of the many who has now been given a second chance at life.”
In the fall of 1995, I decided to attend my son’s first grade blood drive. What seemed to be a relatively easy contribution suddenly turned into the most difficult moment of my entire life. I received a small white envelope in the mail informing me that my blood donation could not be accepted because I was infected with a virus called hepatitis C.
I immediately called my physician thinking it had to be a false positive. He agreed with me and told me I shouldn’t worry too much about the results. His dismissal did not put me at ease, and I sought out a hepatologist for additional testing. My diagnosis was later reconfirmed.
Being a woman and a mother, I was selective with whom I discussed my new diagnosis in an effort to avoid some of the stigmas that had begun to surface around this fairly new disease. While minimal information about this disease was available, hepatitis C was thought to be something only drug users and the sexually promiscuous contracted — something that had never been a part of my past. And yet here I was, plagued by a virus that could possibly take my life!
Though I put forth my best effort to live the positive, healthy lifestyle that I had always known, the stigma associated with the diagnosis surfaced. People with small children began to step away from me, and my love for hosting dinner parties subsided as others were reluctant to taste anything I had come into contact with. Even my boss told me that until I could prove that I would not be a danger to others, I would need to take a leave of absence until further notice.
After four years of living with the virus, I decided to begin the first round of my 48-week treatment in 1999 in hopes of finally curing myself of this ailment. My hopes were high; I had initially responded well to treatment and no longer had detectable traces of hepatitis C in my blood. However, after several months the virus was detectable again. My doctor recommended that I stop taking the medicine since it wasn’t working, but I was determined to finish my final weeks of treatment, with the hope of somehow alleviating myself from this horrific disease that had taken over my life.
As I continued to push through, the treatment began to take its toll on my body. As I finished the 48-week treatment regimen, and with the hepatitis C virus still present in my blood, I knew I couldn’t be alone in this uphill battle. Along with another hepatitis C patient with whom I had become friendly, we decided to start a support group in the hope of letting other hepatitis C sufferers know that they too are not alone. As our group grew in size and strength, we were eventually able to obtain a sponsorship from the American Liver Foundation, allowing us to bring awareness to the issue and raise the hopes of millions of Americans suffering from this illness. The support group has been the most rewarding experience of my life and I will never stop trying to help others until hepatitis C has become a disease of the past. By bringing people with hepatitis C together, I have been able to provide support to others who are struggling with this disease based on my own experience. Through the encouragement of my loved ones and support group, I was able to stay focused and determined and am now able to provide a voice to others on their journey.
Even though this disease has caused me difficult and trying times, I truly believe that hepatitis C has been a gift. The human life is such a fragile thing that we so often take for granted. After receiving the news of my diagnosis, the small insignificant things in life suddenly became unimportant. It’s brought others close to me, and I’ve become more connected to my faith and now live each day to help others struggling with the same challenges that I had faced. I know what it is like to live with the stigma of this disease, to experience the struggles that treatment can bring and to be overcome with fear when you are told that you’ve been “cured” of something that was previously “incurable.”
The fact is that you could be living with hepatitis C for many years without knowing it since there are not always outward signs of the disease. There are many methods of contraction, including blood transfusions prior to 1992, which is how I had contracted the disease. Baby boomers (those born between 1945-1965) are also at risk. Since hepatitis C is a blood borne illness, other methods of transmission include sharing of razor blades, toothbrushes, drug needles and straws, as well as tattoo needles and ink or manicure instruments that have not been properly sterilized. My advice to those at risk is to know that you could be cured of the once “incurable” disease known as hepatitis C and that getting tested and talking to your doctor about treatment options are the steps to fighting this ailment.
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