Urticaria Xplained is a free app aimed at explaining complicated disease information to patients and their families/carers through storytelling. It follows the journey of a real patient and breaks down what urticaria is, explains risk factors, treatment options, as well as side effects and psychological issues.
Available online at www.urticariaxplained.com.au, iTunes and Google Play, Urticaria Xplained features the story of Steph, a teacher, who in 2011 was diagnosed with the condition.
Steph's journey after diagnosis has been long and she believes Urticaria Xplained will help others going through a similar journey, 'The app is an innovative idea. There was no obvious support whatsoever when my reactions began. I wanted to be part of this so that others don't feel like they are suffering alone. It's a very isolating condition".
Urticaria Xplained has been developed and collaborated with input from patients, immunologists and dermatologists, as well as ASCIA (Australasian Society of Clinical Immunology and Allergy) and Skin and Cancer Foundation Inc and is sponsored by Novartis Australia.
Dr Connie Katelaris, Professor of Immunology & Allergy hopes Urticaria Xplained can help patients who are going through a tough time. She says, 'chronic urticaria is such a distressing and persisting condition that it is important for patients to have access to a correct diagnosis and ongoing management. We should aim for complete control so they can get on with their lives!"
Dr Kim Chilman-Blair, Founder and CEO of Medicine X, the organisation that worked with Steph to tell her story, believes that storytelling is the best way for patients to understand and retain information in order to make serious decisions about their treatment.
'Around 80 per cent of medical information provided by doctors is forgotten straight away. Urticaria Xplained is designed to reinforce this information in a creative and powerful way" Dr Chilman-Blair said.
Urticaria Xplained is a free resource available for all Australians, is sponsored by Novartis Australia and was developed in collaboration with ASCIA (Australasian Society of Clinical Immunology and Allergy) and Skin and Cancer Foundation Inc.
For further information, please visit www.urticariaxplained.com.au
Question: How do hives affect you on a daily basis?
Steph Taylor: Hives greatly affect me on a daily basis. They make me want to stay indoors and not socialise with anyone. It can be hard to go to work and I have often cancelled social events due to feeling and looking awful. It is also a daily worry they will occur with no warning.
Question: How were you diagnosed with hives?
Steph Taylor: I was diagnosed by my specialist but it took a few years to conclude that I have chronic ideopathic urticaria - basically that means there is no known cause.
Question: What are your risk factors?
Steph Taylor: I don't know what the risk factors are as I have never found a cause. This means it is impossible to predict and very hard to manage.
Question: What treatment do you use to treat hives?
Steph Taylor: For the first few years I tried a very wide range of treatments prescribed by my specialist. None of which worked. I now have a regular injection. This has been the only thing that works for me and provides relief for extended periods of time.
Question: Do these treatments have side effects?
Steph Taylor: The Urticaria Xplained app is designed for people experiencing similar problems to have a point of reference. There was nothing for me when I was first diagnosed. There is lots of random scary stuff you can Google but nothing that was actually backed by medical professionals to give facts and advice. It was very frustrating!
Question: What is the Urticaria Xplained app?
Steph Taylor: The Urticaria Xplained app will help others to feel like they are not alone. It is a very isolating condition.
Question: How will Urticaria Xplained help other sufferers?
Steph Taylor: I hope that my story will help to humanise the condition and allow people to see how it can affect all areas of life.
Question: What advice do you have for young women recently diagnosed with hives?
Steph Taylor: Having hives and not knowing why can be very depressing and starts to affect your whole personality and infringe on a happy life. There were times when I felt despair and was scared that this was it for life. It's exhausting and debilitating not to mention uncomfortable and unsightly. Don't give up hope. I found a treatment that worked for me. It took a while but I feel I am back in control and not the hives controlling my life. It may be a different solution for others but find a good specialist and keep trying different approaches!
Interview by Brooke Hunter