My uninvited guest: perspectives on chronic disease in young and old
At EuHIC 2018, a patient and advocate panel will explore young and old perspectives on chronic illness and how these experiences and the impact can be different according to age. The discussions will also encompass, cancer given that many people now survive the disease but live with the consequences of their cancer and its treatment, including late effects. The impacts on young and old can be similar in clinical health terms but there can be major differences in other areas including families, work, finance, long term outlooks and independence.
The patient panel will include the following:
Ronny Allan (Chair)
Ronny is an 8 year survivor of metastatic and Neuroendocrine Cancer now living with an incurable but chronic disease. He is an internationally known advocate and activist for his condition.
He is also a WEGO Health Patient Leader having won their 2016 ‘best in show community’ awards and a contributor to Cure Magazine. He had recently been appointed as a member of the Strategic Advisory Board for Multi-Med Inc (publishers of Cancer Knowledge Network and Current Oncology). He runs a blog site which has amassed almost 600,000 views and a Facebook site with over 6000 patients/advocates and medical professionals.
Max is a teenage cancer patient from Bedford, UK. Diagnosed with testicular cancer aged 15 and now five years in remission at 20, he developed a keen awareness of the unique issues facing young people with a cancer diagnosis, both physically and socially.
For Max, these issues include: social interaction and development, education, the late effects of treatment, fertility, body image, and clinical trial involvement. He is a consumer on the UK’s National Cancer Research Institute, as part of their Teenage and Adult Cancer Clinical Studies Group, as well as UK National Institute for Health Research’s patient spokesperson for International Clinical Trials Day 2017.
He is a member of the FAIR trials campaign; a Europe-wide group which aims to reduce the age limits on clinical trials to allow for recruitment of young people.
Bastian is a patient advocate based in Berlin who was diagnosed with type 1 diabetes at 20 years old. Bastian Hauck is also well known for his role as the founder of #dedoc °, an online based diabetes community. He has made a decisive contribution to establish blogging on diabetes and web-based exchanges between those affected in Germany as well.
From sailing round the Cape Horn to participating in numerous holiday camps, Bastian has proved that his illness wont stop him leading an exciting life. Bastian has also been a member of the diabetesDE board since 2015.
Colleen is an independent writer, editor and journalist, specialising in health and medicine. Her writing for patients, families and carers has been recognised with six commendations from the British Medical Association, and in the Guild of Health Writers awards. Colleen also writes for professional healthcare audiences.
She has worked for numerous patient groups, the NHS and private healthcare providers, digital health companies and three Royal Colleges of medicine. She also writes a weekly health feature for a popular magazine.
Colleen offers mentoring and training for professionals wishing to develop their healthcare writing skills.
She is a Senior Associate of the Royal Society of Medicine, and an accredited member of the National Union of Journalists, the Guild of Health Writers, and the Society of Authors. For examples from her portfolio, please visit: uk.linkedin.com/in/colleenshannon and her website at www.healthcarewriting.co.uk
Prof. Dr. med. Carlos Lifschitz
Dr. Lifschitz is a American Board of Pediatrics certified pediatric gastroenterologist and former Associate Professor of Pediatrics at Baylor College of Medicine, Houston, Texas.
He currently is an Associate Physician at Hospital Italiano, Buenos Aires, Argentina. He has served in the Council of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition as well as in the Editorial Board of the Journal of Pediatric Gastroenterology and Nutrition.
He is the author of 88 peer reviewed publications and 2 books. He is a member of the European and Latin American Societies for Pediatric Gastroenterology and Nutrition.