Empowering young people with severe allergies to share their stories

Dr Claudia Gore is a consultant in paediatric allergy and immunology at Imperial College Healthcare NHS Trust, and an honorary clinical senior lecturer at Imperial College. Thanks to a generous grant from Imperial Health Charity, Dr Gore’s team worked with patients and their families to share their stories in a video series called Terrific Teens. To highlight Allergy Awareness Week, Dr Gore tells the story behind Terrific Teens.

We’ve all had the experience of lying in bed and not being able to sleep, but have you ever been awake at night because your skin feels so itchy that you’re scratching so much that your skin bleeds? Or perhaps as part of your food shop routine, you’ve scrutinised every food label for ingredients that could make you desperately ill?

That’s what it’s like to live with a severe allergy. Most of us will never have any idea of what this life is like.

Allergic conditions are the most common chronic childhood ailment in the United Kingdom with a third of children visiting their general practitioner due to allergies at some point in their childhood. In the last census in 2014, about one in ten (400,000) children aged up to 14 years were said to have severe allergy, with an additional 40,000 deemed to have an extremely severe allergy.

Patients can suffer from a variety of food allergies, as well as eczema, hay fever, asthma, gut allergies or a less common drug, venom or latex allergy. Often one person will have more than one allergic condition, with those most severely affected suffering from multiple allergic conditions, or multisystem allergic disease. But for a lot of society, what I’ve just described would simply be considered ‘just another allergy’.

For the past 16 years, I have been looking after children and families affected by allergic disease. One thing I’ve witnessed time and again is the utter misunderstanding of allergic disease and tendency to belittle the sufferers. A turning point came when I learned about digital storytelling in March 2016, when I decided that this was the way to give my patients and their parents a voice.

Thanks to a generous grant from Imperial Health Charity, my team and I held a three day residential workshop where a group of young patients and their parents shared their stories and experiences with us. The result was a series of three minute videos that we’ve called Terrific Teens that are incredibly candid, showing pain, suffering and impact that starts as early as their infant years, but also highlights the amazing resilience, humour and positivity these young people possess.

It puts life into perspective when you hear about one person whose life was threatened by another individual dangling cheese in front of their face, or the harrowing experiences such as incessant teasing, isolation and bullying that can impact grades at school and drive someone to start self-harming.

We can all learn a lot from the experiences we’ve captured in the Terrific Teens series. I watched the videos with deep humility and learned things about the families, whom I thought I knew already, which will help me look after and understand future patients and their parents better. By sharing the Terrific Teens stories, I hope to give people an insight into what it means to live with severe allergies, to raise empathy and willingness to support these young people and their parents to achieve their potential.

We hope a range of people will benefit from watching these videos, anyone from teachers and school staff through to other parents, medical staff, employers, policy makers and of course, other young people who are living with allergies themselves, however severe. At the very least I’m hoping people will watch and share the videos, and help bring us one step closer to demystifying what severe allergies are and how they impact real lives of young people living in London and beyond.

To watch the videos that have been produced so far, visit the Terrific Teens page: http://patientvoices.org.uk/terrificteens.htm