At Home with Eating Disorders First Australian Eating Disorders Conference for Carers

‘At Home With Eating Disorders’ – First Australian Eating Disorders Conference for Carers

Feedback from participants

‘Absolutely well done - from all of us who have been through the grinder! Just knowing that you are not alone is a help, but it is also of immense value to hear others' experiences, to be informed about current research and treatment; recovery stories also give hope. Finally, what happens beyond the conference is of paramount importance in terms of proselytizing, informing and de-stigmatising. The wider Australian public needs to know and they ain't gonna ask! For my daughter and for myself, thank you.’

‘…an amazing inroad into informing and helping people on the journey of recovery - and I very much enjoyed meeting people in the break and talking and sharing experiences with them.’

‘We know what to do now & we're already doing it. I feel this conference pulled us up out of paralysed despair & we can do something to hopefully save our son's life. Thank you from the bottom of my heart.’

‘I found this conference to be extremely valuable and informative. I finally felt validated that I'm doing the best I can and that recovery is possible for my daughter. Thank you for restoring hope!’

‘This conference was just so overwhelmingly wonderful. My rhinoceros husband had quite a few "light-bulb" moments which has helped us become a better team in the care of our loved one. I feel better supported and validated in some of the hard decisions I have had to make in the care of my daughter because of the input of this conference. I wish siblings & all family supporters could have also had the benefit & opportunity for the insights gained.’

‘My husband and I went to the conference feeling exhausted and after ten years feeling there was no hope. We have come home inspired and empowered ready to tackle recovery once more. We have also located another family in the same area where we may be able to share support. Heartfelt thanks.’

‘Thank you for the invaluable insights I gained from the conference . I feel very fortunate to be living this nightmare in a time where there is greater research and understanding of eating disorders, specifically anorexia nervosa. The wider community still needs more education about mental illness as it seems to instill fear into the uneducated and uninitiated.’

‘This conference has been a life changing experience. I spent two days feeling like I wanted to run screaming from the room yet I've spent the days since continually talking about it. I have come home and made major changes to my daughter's treatment and have been inspired to completely change how I approach the ED. Thank you from the bottom of my heart.’

‘Thank you so much to the organising committee for the conference. For someone who is new to this disease it was really informative and gave us greater insight into the treatments and carer approaches that we could use.’

‘Thank you for reinforcing my hope for recovery . I am deeply grateful for having the opportunity to finally be able to source knowledge and skills to empower my ability to assist my daughter’s recovery.’

‘This conference has been a major achievement in collaboration among eating disorder organisations. We need more of it. Let's build on the foundation that has been established with this event.’

Cont’d overleaf Feedback from presenters

‘I thought I was just about as motivated as any scientist could be to crack the enigma of eating disorders. That is, until I attended “At Home With Eating Disorders,” a conference for families and carers in Brisbane, Australia. I have attended FEAST conferences before in the U.S. and came away with a similar feeling which can best be summed up by the title of a commentary I recently wrote for IJED, namely that we have to paddle faster and harder to figure out causes and improve treatments for these pernicious disorders. (seehttp://onlinelibrary.wiley.com/doi/10.1002/eat.22119/abstract ).

‘I think every scientist in the field should attend a carers’ conference. There is quite simply nothing more powerful than sitting in an auditorium packed with parents, partners, sufferers, and survivors to remind us why we do what we do. Every study we design, every paper we write, every hypothesis we generate and test has the potential to transform lives. What we do is not just an academic exercise. It is not just about promotions, impact factor, publish or perish . . . it is about improving lives.

‘Several things struck me at the Brisbane conference. As I looked around the room and talked with parents, survivors, and sufferers it was again resoundingly clear that there is not just one stereotypical family type that is struck by eating disorders. Families from all socioeconomic levels, all regions, all races, and all sorts of parental personalities can be struck by eating disorders. I challenge any scientist to find a single feature that typifies all afflicted families! It just doesn’t exist. Families are desperate for help. Maybe it was a mother who lived three hours from the nearest specialist service who gave me a glimpse into how challenging it is to cobble together a treatment team in far rural areas and how important it is to have a GP who can do his or her best under the circumstances. Maybe it was the virtual mountain of questions submitted to the Meet the Experts panel, most of which we never had time to answer, all of which deserved more time and attention than we were able to give. Maybe it was the unprecedented number of parents talking about dealing with siblings who had eating disorders and listening to the herculean efforts they needed to undertake to deal with two children with eating disorders either sequentially or simultaneously. Maybe it was all of the emotion in the room, the tears, the pleas for services, the determination of the parents to make things right for their children and from partners to help their loved ones. Most likely it was all of these factors that once again rejuvenated my passion for eating disorders research.

‘Being the parent or partner of someone with an eating disorder can be a frighteningly isolating experience. At Home With Eating Disorders showed that even if you do live in rural Australia, you are not alone. In fact, virtual communities like FEAST’s Around the Dinner Table Forum http://www.aroundthedinnertable.org which is a moderated online forum for parents and caregivers of eating disorder patients, allow parents to post their questions and join conversations about the challenges of dealing with an eating disorder in the family. Kudos to the organizing committee and The Butterfly Foundation, FEAST, Eating Disorders Outreach Service (EDOS) and Australia and New Zealand Academy for Eating Disorders (ANZAED) and special thanks Jeremy Freeman for allowing me to bring UCAN to Brisbane, and to June Alexander, survivor and advocate, for inspiring so many people around the world.’

Cindy Bulik - http://uncexchanges.org/2013/05/28/families-and-carers-the-greatest-motivators/

‘I have been attending international conferences on eating disorders for over 30 years in Europe, North America and Australia. This is the first with a focus on carers and families. I am now of the opinion that all leading scientists in the field of eating disorders should ensure that they attend at least one such conference during their careers. This conference which was beautifully organised and executed showed me not only the impact that our research has on those trying to overcome eating disorders but where our priorities should lie when moving our research agendas forward. I was struck by all the heart-felt personal journeys that so many are currently going through, the roadblocks they face and the extraordinary dedication and selfless sacrifice made by so many to assist loved ones through these challenging times. Many doubted their ability to ever conquer their demons and a moment that will live with me forever was when a total stranger came up to me and hugged me thanking me for the research that I had undertaken that had moved her from a state of hopelessness and despair to a very cautious optimism and hope for the future. I would like to see more such conferences.’ Stephen Touyz