Dartington, Devon, UK
Diagnosed with Hep C in 1992
  
My mother died in a not-very-nice way in 1991. She had had multiple blood transfusions when my sisters and I were born. I was severely jaundiced, so I also had a transfusion. I now recognize that she must have had hepatitis C, as she had encephalopathy and liver cancer during a time when there was no hep C test.

Growing up, I was more tired than everyone else was, and could never understand why I couldn’t keep up with my peers. I was vaccinated at my boarding school, and they used the same needle for 10 of us at a time. I got married and had a little girl who is now 22 and doesn’t have hep C. I also have a 10-year-old son who is negative for hep C.

I traveled the world teaching English. While in Cyprus, I donated blood, as I had done in the U.K. before I left. However, my blood couldn’t be accepted because of hep C. I went to the doctor and asked what hep C was and they didn’t know. This was frightening, especially as I was alone raising my 1-year-old baby girl in Cyprus while teaching 12 hours a day.

They said that I probably had a year left. I would die just as my mother had two years previously. My husband got me to Jeddah, Saudi Arabia, where they knew all there was to know at the time. I paid for treatment with interferon (injections three times a week) and ribavirin (daily pills). It didn’t work and my marriage disintegrated because of treatment’s extreme side effects. Prior to treatment, no one had informed me of the side effects.

I came back to the U.K. and did two trials, both of which were peginterferon and ribavirin. Also, I did a lot of work to raise hep C awareness. That was 17 years ago. Since then I have been stigmatized. I’ve been called filthy, dirty and disgusting. Loneliness led me to abusive relationships with men. I studied to be a holistic therapist, but that was cut short because of arthritis. My fourth treatment using telaprevir, peginterferon, and ribavirin left me with hypothyroidism, irritable bowel syndrome, fibromyalgia and extreme osteoarthritis. My life is very difficult.

I did two trials for my country, and for years, they left me with no help. I finally got disability, which means my son, daughter, and I can eat properly and live in a nice house and have a car. My daughter got through grammar school and higher education; she is now traveling South America on a gap year. My son is doing well and is a lovely happy chap.

I am desperate to get Harvoni as I now have cirrhosis. Our government is dragging its heels over the price. I have learned to be patient, but I’m scared for my gorgeous children. There are no other close relatives around and I desperately want to see my little man grow up.

I am studying to be a counselor so I can help others in my situation. I had no one to talk to for 20 years and I don’t want that for anyone else. Thank goodness for Hep magazine, Karen (IHELP C) and Lucinda Porter, who have given me the drive and hope to carry on. I am also thankful for my gorgeous children who have suffered through this. I can’t believe that they still love me so much after the difficulties we have been through.

What three adjectives best describe you?
Driven, patient, strong in spirit

What is your greatest achievement?
My children and the trials I did to help all people with hepatitis C. I have traveled to many places; taught English in Saudi Arabia, Cyprus and Crete. I help run a support group.

What is your greatest regret?
That our health care system gave so many people HCV and HIV and is only just starting to recognize us and say sorry to us.

What keeps you up at night?
My cirrhosis and the fact that I may die early and not be there for my gorgeous children

If you could change one thing about living with viral hepatitis, what would it be?
That people would recognize how much the illness affects us all physically and mentally. I’d take away the stigma.

What is the best advice you ever received?
To never drink alcohol, eat extremely healthily and live with hope and patience.

What person in the viral hepatitis community do you most admire?
Karen Hoyt, Hepatitis C Trust’s Dr. John Christie, my liver nurses Laura and Fiona, Lucinda Porter, Alan Franciscus, and everyone who battles these awful diseases

What drives you to do what you do?
To be sure that people are educated about HCV and that everyone has someone to call so they will never be alone

What is your motto?
Be patient and kind; live in the moment and always keep learning and helping others.

If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My children and our cat

If you could be any animal, what would you be? And why?
I’d be my cat, as she has a really lovely life. Her biggest worries are which bed to sleep on next. I’d also choose a bee, as they are so busy, like I am.