The American Liver Foundation and everyone concerned with Hepatitis C visiting this website would love it if you would share your story too! Simply email your story and picture (if you like) to: firstname.lastname@example.org. We would be happy to add it to the Patient Stories page of this website so others won’t feel like this is something happening only to them. Thank you.
I have been fighting the Hepatitis C virus for over 30 years, having been infected through blood transfusions during open heart surgery when I was 8 years old. I was diagnosed in 2003 and was told I was stage 4 … unfortunately, that wasn’t the worst of it.
The worst news was when they told me my then three- week old son was also infected [as 5 out of every 100 babies contract the virus in utero or during birth]. This part of our story has ended in a miracle as my beautiful son was able to fight off the infection on his own with no treatment! He is negative with no signs of ever having the virus! The doctors had told me a very small percentage of children are able to do this and we thank God for this wonderful miracle of life and health.
As for me, I was treated on a clinical trial for six months and the end result was that I was a non-responder. I then immediately switched to the strongest medicine available (daily infergen and ribavirin) and while I was on the treatment I cleared the virus. Unfortunately after a year and a half of treatment I relapsed. Even though the doctors were not hopeful, I decided last winter to give treatment one more try. Unfortunately I did not respond to the treatment and had to stop, making me an official non responder.
They are hoping for new oral treatments to be available in a few years, but some of us do not have a few years to wait.
My journey with liver disease began in 1994 when I had acute Hepatitis C from a tainted blood product. I recovered from the acute phase but still struggle with chronic Hepatitis C today. Treatment hasn’t worked for me, but I remain hopeful that with many new treatments being researched and tested today, I will be cured someday soon.
In 1997, I began running a hepatitis C support group, using my skills as an RN to educate and counsel patients about this disease. I found there were many misconceptions, discrimination and an overriding stigma about liver disease that still exists today. No one needs to feel tainted, dirty, or guilty because of a Hepatitis C diagnosis. Patients tell me they don’t even want to tell their dentist or other health providers they have the virus because of fear they will be treated differently! It’s really important that you tell everyone involved in your care about your diagnosis. All medical personal should treat every patient with universal precautions, whether they know the patient’s status or not. No one wants to expose people to tainted blood, so some precautions are in order in your everyday life, such as carrying Band-Aids, never sharing toothbrushes, manicure equipment, or razors. You should ask your physician about any special precautions in your particular case.
Running a support group has been very rewarding for me on many levels. Many patients who are cured continue to attend the meetings to lend support to others. It’s a major reason for the success of the group. Sometimes people come into the group afraid they might die in the near future, and they are scared to death of the treatment. They’ve heard horror stories about Hepatitis C and the drugs to treat it. It’s really such a relief when they learn some solid facts and dispel some misconceptions. They are amazed to see people who have been cured of Hepatitis C for several years. This gives them hope. They leave their first meeting feeling like they’re not alone, and like a great weight has been lifted.
It has been wonderful for me to see the new treatments that are available leading to a high probability of being cured. Treatment can be difficult, and learning how to cope from those who have experienced it can be very helpful. Even though there are many difficult side effects, with information and support you’re more likely to effectively manage them and complete your treatment. Since 1994, I’ve seen much progress with each new treatment. Increased numbers of patients are being cured. We all wish the progress was faster, because there are still many who have suffered greatly with this disease. I have personally lost 3 friends to Hepatitis C. But with the great progress that is finally being made, many more lives will be saved.
Arm yourself with education. If you think you may have Hepatitis C, get tested. The most important thing to remember is that there is hope!