The Ehlers-Danlos Society has been hearing from a growing number of families and individuals sharing their experiences of being diagnosed with a factitious disorder, either imposing ill health on self, or, more typically a parent on a child. People have spoken publicly at meetings and shared the most harrowing and heart-breaking stories that have had a profound effect on their social, professional, and emotional wellbeing.
We note that Ehlers-Danlos syndromes are being listed as a condition to be concerned about when looking for a factitious diagnosis. The Ehlers-Danlos Society would like to understand why this is happening, and what role the charities can do to support better understanding in our communities and among clinicians and social services.
“It is of immense importance to us as an organisation to let the voices of these families be heard, and to find a collaborative way forward to start improving access to diagnosis and care for children and adolescents. No family should fear reaching out to authorities and health professionals at the risk of losing their children.” explains Lara Bloom, President and CEO of The Ehlers-Danlos Society.
We intend to start this process with a roundtable expert panel discussion at The Royal Society of Medicine, London, April 27, 2020. We will be bringing together senior clinicians and executive staff from The Ehlers-Danlos Society, Ehlers-Danlos Support UK, HMSA, other charitable organisations, senior clinicians in Paediatrics, Rheumatology, and Psychiatry, and representation from the Department of Health and Social Services. The purpose of the meeting is to share experiences, and to identify collaborative ways forward and priorities in research.
