Share your story
Why be a case study?
Raising awareness of hepatitis C is absolutely vital. Most people who have hepatitis C in the UK – up to 350,000 in total – are still undiagnosed. Many more have bad experiences because the majority of the population still don’t understand what hepatitis C is or what it does. Hearing someone's personal story is probably the best way to get these messages across - to the media, to policy-makers, to politicians and to everyone else.
People love to hear about real-life experiences, and your story about hepatitis C can help to raise much-needed awareness.Often journalists will ask us for a case study to accompany an article about new statistics or research because a personal testimony will help to bring a news story to life.
Some people choose to share their story because they want to warn other people of the risks of transmission. Some people like to do it because they have a particularly interesting story that they want to be told. Other people may be motivated to do it after receiving the good news of successfully completing treatment.
Many people who have shared their story said they felt a lot of satisfaction from being able to help raise awareness.
What would I be required to do?
Firstly, tell us about your experience. Everyone’s story is different and some may be more attractive to the media than others so, if you can start by telling us all about it, we will take it from there. Please email your story to email@example.com and then someone from The Hepatitis C Trust will contact you if we think the media will be interested in what you have to say. We will talk to you about your case and may arrange to meet you in person. Your story can then be written up in a shortened format that is useful to journalists and the Trust will work with you to make sure that you are happy with it.
If you are happy and then agree to this, we will keep your details on file until asked by the media for a case study that best fits your story. This may take weeks, months or years as often we find journalists are interested in one specific angle for a while, and then may be interested in different aspects at different times.We will be actively trying to ‘pitch’ your story to the media, although whether it is used or not may depend on many different things. Because of this, we will always check with you again before giving your contact details to journalists, in case your circumstances have changed at all.
What if I change my mind?
This is an important question because you do need to be absolutely sure that you want to do this. You must be aware that any press you agree to do could be local, national or even international and once it is in the public domain there is very little you can do if you change your mind.
If you have initially agreed to do this and then you change your mind, you can ask The Hepatitis C Trust not to offer your case studies to journalists and we will always comply with your wishes but, if you have already spoken with a journalist yourself (or given the Trust permission to do this on your behalf), sometimes an article will have been published and cannot be changed. You should be aware that most news is also published on the internet meaning that a “google” search of your name could easily reveal this information. You should therefore only consider becoming a case study if you are happy with all friends, family and employers knowing about your hepatitis C status. If after some consideration, you don’t think you would like to take part in media work, please feel free to talk to us about it. We would not like any patients to do anything they feel uncomfortable with but do feel free to talk through your anxieties with us. We are here to help but we also need as many case studies as we can, and by doing this you really can make a difference.
Some current case studies:
Many patients have already agreed to share their story with the media. Below are some examples:
Jackie volunteers at The Hepatitis C Trust and speaks with patients on the helpline:
“Being a case study and working on the helpline has been a rich and rewarding experience, enabling me to reach out equally to the newly diagnosed and those grappling with treatment and disease progression. It is a mutually supportive role where I have been able to both give and receive awareness and understanding.”
David has appeared in the Department of Health ‘FaCe It’ campaign and an article in a national magazine. David says:
"I have had hepatitis C for more than 40 years. In the last 8 years I have become increasingly affected with many severe bouts of illness. About a year ago, I became much worse and in March I was rushed to hospital. I was given a liver transplant in May. Hepatitis C is a very serious illness and awareness of hepatitis C is essential. I hope that telling my story will encourage people to get tested as I believe that earlier diagnosis leads to a good chance of getting through the illness.
Lesley has so far been interviewed by her local paper and by a national paper who were running a health story on hepatitis C. Lesley says:
"I decided to share my story as I felt that raising awareness was the key to getting more people tested and diagnosed, which could ultimately save lives. I had been visiting my GP for over 4 years with symptoms without a successful diagnosis. Then I heard Anita Roddick's interview on Radio 4 and realised her story was the same as mine. I went back and asked for a hep C test and that was how I discovered I had the virus. Had it not been for hearing that interview, I would probably have remained ill and undiagnosed and would never have undergone treatment. If my story helps just one person like me, it will be well worth it.
If you would like to share your story please email firstname.lastname@example.org