Natasha Harley at a Changing Futures creative workshops.
Cystic fibrosis (CF) is one of the UK’s most common genetic conditions. Recently, the UK Cystic Fibrosis Gene Therapy Consortium announced the largest trial in the world of gene therapy for CF. The Changing Futures project worked with scientists, artists and young people with CF to develop new ways of exploring gene therapy and CF. Natasha Harley, one of the teenagers who took part, discusses her experience.
Being a 17 year old with CF can be frustrating. It’s a time when you feel you want to know more about the disease that has affected you all your life, and a time when you feel you might actually be able to understand some of it.
The problem is the lack of middle ground between children’s books and medical journals. Information is either patronising or difficult to understand. This is what attracted me to the Changing Futures project. The main aim was to create a useful online resource, taking the most up to date information about CF and breaking it down to make it easy and understandable to a wide audience.
One of the main topics of discussion is gene therapy, a revolutionary treatment that might one day be used to treat the disease. As this could profoundly affect my life, I naturally had plenty of concerns and questions.
I was given the opportunity to interview scientists and help make videos, which has greatly improved my knowledge of gene therapy. I learnt that to cure cystic fibrosis the non-working copy of the CFTR gene must be replaced by a healthy copy of the gene and that this would get into the body of the patient using a gene therapy vector such as a liposome. However, I also discovered how difficult it is for this vector to reach its target. This is just one of the problems scientists are trying to overcome.
If gene therapy were to be successful, it could make a big difference to the lives of myself and others. Learning more about it really made a difference to me and the treatment no longer feels so alien or worrying. This makes me hope that many other people in my situation will see the website and take in what it has to offer. Hopefully taking the mystery out of this disease will make it less scary for young people.
The site also has lots of information about CF itself and, with the help of us participants, is a true representation of what it is like to live with CF. Having cystic fibrosis certainly does not define us.
The website is not just for people with CF. It’s also for family, friends and teachers. The teacher zone contains hands on activities and resources for classes learning about gene therapy and CF.
The questions I had are on the website for others to see, and the subject is explored with animations, timelines, video diaries and interviews with scientists. These resources will hopefully help to raise awareness, and provide a new and exciting way for people to find out more. I am very proud to see the website up and the project completed. I hope it can help out other teenagers during this tough period as much as it has helped me.
Natasha Harley
The Changing Futures project is led by Nowgen and supported by a Wellcome Trust People Award.
Image credit: Nowgen Centre
Filed under: Development, Ageing and Chronic Disease, Genetics and Genomics, Guest posts, Health, Public Engagement, Science Communication Tagged: Changing Futures, cystic fibrosis, Gene therapy, Nowgen, Patient information
