Riane Nesper

Riane lived with hepatitis C for 11 years before she got cured. This is her story.

I was diagnosed with hepatitis C 11 years ago. I contracted it through drug use. I continued to use regardless of my diagnosis. Throughout my drug use, I had short stints of sobriety. I would see a doctor, get my liver checked out and maybe get some blood tests if I could follow through. I saw multiple doctors over the course of the years. Each time I was told I could live my life completely normally and symptom free. Hepatitis C is a “slow progressive disease”. Which is the case for some, I guess.

Not once was I warned of the actual damage that could happen in the meantime or how hepatitis C could affect my hormones, my emotional state and my physical body. I knew it could possibly kill me in the long run but that was more or less brushed under the rug. “You’ll be fine”, they said. “Most people live 20-30 years symptom free”, they said. Wrong.

Fast forward to the best years of my life. I found the man of my dreams, got sober and had a beautiful daughter. I was living a life that I never thought I’d be alive to live.

Then, a year and a half to two years into my sobriety, I began to have sudden, life changing symptoms. Drenching night sweats (changing my clothes 4-6 times a night), inability to eat or properly digest foods I’ve been eating my whole life, flu like symptoms, extreme physical pain, depression, anxiety, inability to control my emotions. I also began to look forward to my period because it was the only time I felt normal and had energy – which was super weird. I was unable to be a wife, mother or friend. I lost myself in my sickness.

I began going to doctor after doctor, I had test after test but no results and no answers. No one could figure out what the cause was. Not one person. Heartbroken. All I wanted was my life back. 

After over a year of sadness and hopelessness, I was referred to a liver specialist and I finally felt a sense of hope. My GI issues were a result of me losing the ability to digest protein, because of my liver. I felt normal on my periods because my liver lost the ability to filter my hormones. The night sweats and fevers happened because my body was trying to fight for me. Everything I’ve been experiencing was a result of a virus that was killing me. I never once thought that I would experience any of this because of hepatitis C, not this early on. 

I trusted and believed the stigma, but each case is different. The difference for me was my genotype. I was part of 10% of the world with the most rare and aggressive strain of the hepatitis C virus.

I am now 100% cured and free of hepatitis C. I was lucky enough to be able to take Epclusa. It was not fun, I felt terrible. But I now have a future to look forward to. I am regaining my health and am able to function to the fullest for my family. My symptoms have slowly faded away since being cured and I am feeling better than I have in many years.

I am not sharing this for any other reason than to bring light and awareness. My hope is that my story can be a comfort or helping hand to another. My wish is to bring awareness to this disease and anyone suffering. To break the stereotype and stigma. Ask questions, do your homework. Fight for your health because no one else will.