There are effective treatments for hepatitis C nowadays

I was only diagnosed with hepatitis C later. I was taking part in a medication study at the time and my blood was routinely tested for various germs.

After the diagnosis I was referred to a hepatologist, which is a liver specialist, and started treatment with alpha-interferon. Unfortunately, the treatment didn't work. It didn't have any effect and it was stopped after six months.

Part of me was frustrated, but another part of me was happy because it had been causing side effects. I mainly suffered from trouble concentrating. My wife always said that she could barely watch me tying my tie in front of the mirror in the mornings because it took me so long. I also had memory problems. I forgot lots of things and wasn’t very reliable. I was actually working full time but it was a real struggle to get everything done.

About eight years later there was a new treatment – a combination of interferon and ribavirin, which is an antiviral drug. It caused strong side effects as well, but the chances of it helping were better, and it was a promising treatment for people who had already tried interferon on its own without success.

And it worked for me. The acute infection had cleared up after one year and there were no longer any traces of the hepatitis C virus in my blood. And it hasn't come back since.

The treatment was very distressing. I had to take the medication for one year, and the side effects got worse and worse over time. My blood count in particular was a problem, I had to go to the hospital for check-ups every week. I had problems with my skin and the lining of my mouth, too. The physical weakness was worst. Just walking slightly uphill felt like climbing Mount Everest. I was really just a shadow of my former self back then.

Because of that, I had to retire from work in my early 60s. I had been the Commercial Director of a hospital with 600 staff and could no longer do the job. It took me one-and-a-half years to recover after finishing the treatment.

Even though the hepatitis C infection had cleared up, my liver was still damaged because it was treated so late. I was actually diagnosed with hepatitis at an early stage, but the hepatitis C virus wasn’t discovered until the early 1990s. And then it took a while for an effective treatment to be developed.

The damage to my liver caused the beginnings of liver cirrhosis, as well as varicose veins in my food pipe due to the built-up blood from the liver. Unfortunately that couldn't be stopped.

Because of the liver damage, I still take care of what I eat and don’t drink any alcohol. And I’m often confronted with stereotypical attitudes. When I drink my non-alcoholic beer at parties, very often people ask, “do you have an alcohol problem? Did you used to be an alcoholic?”

That's why I didn’t really talk about my illness, and only told my closest friends and colleagues. And at some stage I also stopped having the check-ups at the hospital where I worked. I didn't want others to know, and preferred to have a clear separation between my private life and work.

Luckily, I'm a very optimistic and positive person. Although I know I’m ill, I’m grateful for what I have in life and what I can influence myself.

And I’m active in the liver disease support group deutsche Leberhilfe e.V. in Cologne. I can help other people there, and always encourage them to keep their chin up.

In the more than ten years that I’ve been involved in the support group, I've seen the truly revolutionary development of new medications first-hand. Modern treatment with direct-acting antivirals starts to work within just a few weeks, has very good chances of success, and now only has minimal side effects. There are very effective treatments for hepatitis C nowadays – if it's discovered.

Unfortunately, a lot of people have hepatitis C without knowing it. But if these infections are detected and treated early, you can avoid severe complications like cirrhosis of the liver and liver cancer.

It's really important to increase awareness here. Lots more people need to know about it and get tested. That’s important from an economic point of view too. If everyone with a hepatitis C infection develops cirrhosis of the liver, that'll be a burden on the healthcare system.

That’s why it’s so important to me to share my story. I want to give a face to the disease. And pass on the message that it’s not a fate that you simply have to resign yourself to.