Living through a pandemic and the uncertainty it brings presents its own unique challenges, and when you are supporting a loved one with an eating disorder, it can be even more challenging. While we all hope that this year will be better than last, it is likely that the uncertainty will continue for some time to come. We encourage you to continue to reach out for support when you need it. Health professionals provide specialist treatment, family and friends can be cheerleaders and EDANZ are always here for you.
Along with an update on two important studies on eating disorders, with the opportunity for you to participate in the largest and most rigorous genetic study of eating disorders to date, we are thrilled to present an initiative that aims to raise awareness of the impact of eating disorders on those suffering and their families, as well as raise funds for EDANZ – Brunch for Better. Please do consider getting involved to combat stigma and help EDANZ carry out our much-needed work.
We encourage you to take a look at the other links provided in this newsletter, please learn as much as you can, and remember full and lasting recovery from an eating disorder is possible at any age or any stage.
for the EDANZ Support Team
Below is an update on two studies about eating disorders provided by the University of Otago. Research is an invaluable tool in advancing our knowledge of eating disorders and to help continue to improve treatments. The ultimate goal is to find a cure!
The Eating Disorders Genetics Initiative (EDGI) is the largest and most rigorous genetic investigation of eating disorders to date. The international EDGI study started with the United States, Australia, Denmark and New Zealand, with new countries such as Mexico recently joining.
EDGI aims to identify genes that predispose people to developing anorexia nervosa (AN), bulimia nervosa (BN) and binge-eating disorder (BED) in order to better understand the relationships among eating disorders, and with other common conditions such as mood and anxiety disorders. Better understanding of genetics and physiology of EDs is necessary to inform prevention and the development of new and better treatments. In the longer term, ultimately the goal is to find a cure for these disorders.
EDGI follows the ground-breaking advances that have been made recently through another collaborative study (the Anorexia Nervosa Genetics Initiative/ANGI) in which researchers, including our current EDGI team leaders (Professor Martin Kennedy and Associate Professor Jenny Jordan) identified both psychiatric and metabolic causes for anorexia nervosa (read more about it here: https://www.rnzcgp.org.nz/GPPulse/Clinical_news/2020/Rethinking_Eating_Disorders)
We have an ambitious target to recruit 3,500 New Zealanders over the next 1-2 years. To date we have had around 700 people complete the in-depth EDGI survey and donate a saliva sample. We are delighted by that response but welcome more participants with anorexia nervosa (AN) bulimia nervosa (BN) and binge eating disorder (BED) at any stage in their lifetime who want to help out with this essential research.
Thank you to the many EDANZ members who participated in the COSTS study, either as someone with a history of a clinically significant eating disorder (ED), or as a carer of someone with an eating disorder.
The COSTS study looked at the broad range of impacts of eating disorders on those who have had an ED and those who care for them, including economic impacts, psychosocial, study and career impacts. The COSTS study also looked at access to services and treatment satisfaction. We recruited more than 630 people over a four-year period and want to thank EDANZ who contributed greatly to this study by aiding with recruitment, and as collaborators on the research project.
We finally closed off the surveys at the end of 2020 and are now busy data cleaning and re-running data analysis with the final complete datasets. Our summer student Shistata Dhakal has just won the best student presentation in the University of Otago, Christchurch summer studentship programme with her paper reporting some of our data looking at the economic impacts on carers. We have further more complicated calculations to do but these data illustrate the additional pressures carers experience outside of publicly funded treatment. We hope the insights from this study will help highlight the broad impacts of eating disorders in New Zealand and that this will inform service providers and funders and will assist with advocacy in this area.
We will be submitting papers for publication by mid-year but it can take a while to get them in print and able to be widely publicised. One study which has already emerged from the broader COSTS project looked at eating disorders service use in Māori compared to non-Māori – see link to the Spin-off write up (https://thespinoff.co.nz/atea/atea-otago/15-10-2020/systemic-barriers-are-keeping-maori-with-eating-disorders-from-treatment/)
Watch this space – we will keep you posted as new studies are published.
Information to help “bust” common myths about eating disorders and examples of early warning signs of eating disorders to look out for.
“The weakest reason I get for rejecting FBT is that the teen does not want to do it. In my opinion, the child’s perspective should have no bearing on whether you decide to use an effective, research-supported treatment to help them.”
Numerous studies and articles have addressed the nuances of target weights in illuminating, empowering ways.
We must not give up hope. Families have every right to demand evidence-based treatments for their loved ones, whatever the length and severity of their disorder.
Delayed gastric emptying – why restoring nutritional wellbeing can be painful for your loved one.
Brunch for Better is a campaign dedicated to raising awareness of eating disorders in Aotearoa. By hosting a brunch, you’re helping to address the stigmas and misunderstanding that so many New Zealanders face.
EDANZ believes parents/carers have unique abilities to support one another and we hold regular meetings to which you are warmly invited. Currently, we're joining together around the country once a month thanks to Zoom videoconferencing technology.
If you would like to participate in a virtual support group, please RSVP to email@example.com and we'll send you the link.
Upcoming 2021 Dates:
Monday, 15 February
Monday, 15 March
More information can be found on our website Parent/Carer Support Groups page
Remember: EDANZ helpline is open throughout the holiday period – please don’t hesitate to contact us firstname.lastname@example.org or leave a message on the phone 0800 2 EDANZ and we will get back to you as soon as we can. If you are concerned about the safety of someone, please ring 111 or go to the Emergency Department of your nearest hospital.
We acknowledge times are financially tight for many, but at this time there is also a corresponding increase in demand for our services. As a volunteer organisation relying totally on donations and grants to provide our services – many of which are currently self-funded – your financial support is more needed now than ever before.
Your donation will enable us to continue our work providing support to families, education to healthcare providers and the community, and advocating for improved access to evidence-based treatment for all affected New Zealanders.