Susan Minuk speaks with Wendy Preskow about the National Initiative for Eating Disorders.
Wendy Preskow: Educating about Eating Disorders.
Of all the mental illnesses, the medical world recognizes eating disorders as the most deadly. Yet in our society, eating disorders are largely misunderstood. Wendy Preskow is the voice for Canadian families, caregivers and individuals who have been affected by eating disorders. Preskow spoke to The CJN about the National Initiative For Eating Disorders (NIED), the organization that she co-founded in 2012.
What was the impetus for creating the National Initiative For Eating Disorders?
I have a sick daughter, Amy, who has been suffering for two decades from anorexia and bulimia. Imagine someone with a chronological age of 34 with incredible potential, but with a seven year old’s lack of social and emotional independence and the osteoporosis of a senior. In high school, Amy would ask herself, “Who am I?” There was never abuse or trauma. She was never an overweight child. But she always felt she was never enough.
We found there were a lack of resources and an incredible lack of awareness and understanding that an eating disorder is a mental illness. What we came to realize was how many thousands and thousands of other families there are across the country in the same or worse situations than us. I could not just sit back. I had to take action.
For the very first time in the eating disorders landscape in Canada, NIED was the catalyst to bring multiple stakeholders together in Winnipeg in September 2016. Four Canadian national organizations united to formulate a national eating disorder strategy, which will include six pillars: treatment, training, education, prevention, caregivers and research. This strategy will be launched later this year.
An estimated one million Canadians are struggling with eating disorders. Please explain what an eating disorder is.
There are different types of eating disorders and the most common disorders that people hear about are: anorexia nervosa (starving); bulimia (binging and purging); and binge eating (constant eating). From our daughter’s perspective, anorexia is all about control. Something in her life that she found she could have control over was food. Food is actually a symptom of the disease. All of these disorders are deep psychological and psychiatric illness, in which the food is a symptom of the disease. It manifests in what they do with food – whether they starve, or whether they binge. The binging and the purging is more about wanting to numb the emotions because they get a high from the purging. It’s been said that it’s the same kind of high that somebody would get using cocaine.
Anybody can be at risk. The doctors say that 80 per cent is genetics, which loads the gun, and 20 per cent is the environment, which pulls the trigger. If you are predisposed, you can end up being a drug addict or abusing alcohol, or end up with an eating disorder. As Jews, we take care of others who are struggling and cannot help themselves, and who certainly do not choose to live this way.
Statistics indicate that one in 10 people suffering from an eating disorder will die. What are the health consequences of an eating disorder?
Eating disorders are serious mental illnesses associated with significant medical complications that affect every organ of the body. My daughter has osteoporosis in her spine, because of the starving and lack of nutrition. Amy’s iron levels, growth, menstrual cycles and electrolytes are out of balance. There have been frequent visits to the emergency room for fainting.
What is the treatment for eating disorders?
If people are medically unstable, they need to be hospitalized. Once they are medically stable, there are different methods therapists will use, such as dialectical behavioural therapy and family based therapy. There are only 20 residential beds in all of Ontario for anyone over the age of 18. There is no funded residential treatment
centres for adults like there are in the United States, the U.K. and Australia. The goal is to nourish the person so the brain can start functioning again, but it becomes a revolving door, because there are not enough resources to work on an individual basis. Once they are medically stabilized, they need a place to get well and to heal – ideally a residential government-funded, community-based program.
What does recovery look like?
Recovery means so many different things to so many different people. Our daughter has been sick for too long, so for her to be completely free of her eating disorder for the rest of her life, I don’t think will happen. Recovery would mean to be a functional citizen and to be able to be part of society and be included in society, and for her to feel that she can cope in society.Eating disorders often come with depression, anxiety, ADHD and OCD issues. It’s hard to say whether the anxiety came first or the eating disorder.
How important is education, not only for the patient, but the entire family?
The caregivers need help. It’s such a complex, long and lonely illness. NIED has hosted 67 free symposia for the public to attend. They are intended to help families, friends and loved ones understand what they are dealing with and educate those affected by eating disorders. It’s an illness of the brain and families just don’t know which way to turn.
How accessible is it for Canadians suffering from eating disorders to receive timely, comprehensive and specialized treatment?
The provincial costs associated with patients who have anorexia nervosa and are on long-term disability may be as high as $101.7 million a year – 30 times the cost of all provincial specialized eating disorder services. Too many Canadians suffering from eating disorders do not have reasonable access to timely, comprehensive and specialized treatment. There are waiting lists for assessments. If and when they eventually get into treatment, they often have to wait at least four to six months to actually start treatment. If your child is in danger and he or she won’t go to emergency, then you should phone the police.
This interview has been edited and condensed for style and clarity
The National Initiative for Eating Disorders Propels ‘Can’t Afford to Wait’ Message with Generous Donation for Cutting-Edge e-Learning Platform
(May 28, 2019 – Toronto, Ontario) – The message at this year’s fourth annual World Eating Disorders Action Day on June 2nd is, “Eating Disorders Can’t Afford to Wait,” and the National Initiative for Eating Disorders (NIED) is taking-action now.
To show their support, NIED, a not-for-profit organization has gifted a generous $15,000.00 donation to drive the development of an innovative national e-learning platform aimed at addressing the gaps in the Eating Disorders field. The donation will fund the identification and adaption of existing evidence-based research related to low-intensity, rapid early treatment of Eating Disorders into online education resources aimed at caregivers, primary care providers and individuals recovering from Eating Disorders.
Sonia Kumar-Sequin, Executive Director of Body Brave, a non-profit that offers community treatment and support for those struggling with body image, disordered eating and eating disorders states: “Using technology and innovation, we can drive systemic change in the Eating Disorder world. Virtual approaches, both in healthcare and education spaces, are changing the way our world works. Why shouldn’t we adopt these technologies to change the way Eating Disorders are approached? The time has come for pioneering action. Eating Disorders can’t afford to wait.”
“We all want to have a positive impact,” says Academy for Eating Disorders (AED) president, S. Bryn Austin, “but one of the biggest set of hurdles we face as a community is that, because of myriad problems with healthcare delivery systems around the globe, the majority of people with Eating Disorders — or mental health conditions of any type, for that matter — do not get diagnosed or receive treatment.” AED is a global professional association committed to leadership in eating disorders research, education, treatment, and prevention.
The intent of the donation is to fulfill this need for immediate and accessible training for healthcare professionals and resources for those struggling and their caregivers. In 2014, 70% of doctors reported to receiving five hours or less of Eating Disorder specific training in medical school. Currently, Eating Disorders have the highest mortality rate of all mental illness and the incidence of children with eating disorders is rising at an alarming rate.
The development of the e-learning platform is a collaborative project made up of key stakeholders. In addition to NIED, Body Brave, two community-based organizations (Eating Disorders Nova Scotia and Bridgepoint Centre for Eating Disorders Saskatchewan), a treatment program in Ontario, researchers from Hamilton and Niagara, have pledged their support through commitments to provide content and promote the e-learning platform within their networks.
In the lead up to the release of the e-learning platform, NIED, in collaboration with Body Brave, will be hosting the first-ever virtual Body Image and Eating Disorders Conference, Body Peace, from October 4-6, 2019. The conference will feature presentations from Eating Disorders survivors and professionals. Attendees will also be given the opportunity to preview components of the e-learning platform, such as the “caregiver classroom”. Join over 250 organizations in showing support on World Eating Disorders Action Day. Use social media to engage with us on Facebook, Twitter and Instagram on June 2nd by using the hashtags: #ShowUsYourPurple, #WorldEatingDisordersActionDay, #EatingDisordersCantAffordtoWait and #WeDoActNow2019. Wear purple to show your support, attend workshops and advocate openly for education and treatment.
The National Initiative for Eating Disorders is a not-for-profit organization dedicated to filling the gaps in Eating Disorders care through education. NIED works with caregivers, healthcare professionals and social services to highlight best practices in prevention, health promotion and treatment. To learn more about NIED and Eating Disorders in Canada, visit: https://nied.ca/
Lynne Koss (she/her)
Co-Founder/Vice President National Initiative for Eating Disorders www.nied.ca Twitter: @nied_ca
Facebook:www.facebook.com/niedcanada 416 843-3496
Nine provinces and territories hosting 35 events across Canada for Eating Disorder Awareness Week.
Toronto, Ontario –January 30, 2019 – With an estimated one million Canadians struggling with Eating Disorders, we simply can’t afford to wait in advancing awareness and treatment for Eating Disorders in Canada. Eating Disorders Awareness Week (EDAW), runs annually February 1-7. EDAW urges Canadians to raise awareness of the causes, prevalence and impact of Eating Disorders.
The staggering statistics surrounding this mental illness clearly reflect such need and urgency. One in ten people suffering with an Eating Disorder will die. One in five teenagers are dieting at any given time, increasing the risk of developing an Eating Disorder. Eating Disorders in Canadian children are estimated to be two to four times greater than the incidence of Type 2 Diabetes in such children. Eating Disorders do not discriminate – they can develop in all genders, ages, racial and ethnic identities, sexual orientations and socio-economic backgrounds.
The National Initiative for Eating Disorders (NIED), National Eating Disorder Information Centre (NEDIC), the Canadian Mental Health Association (CMHA), Looking Glass Foundation, and Body Brave havejoined forces to develop this year’s campaign: Eating Disorders can’t afford to wait. With millions of Canadians experiencing the devastating impact of Eating Disorders, the funding and treatment of Eating Disorders can no longer be put on hold.
To date, EDAW has been proclaimed in seven provinces, supported by 60+ municipal proclamations. There are over 35 individual events, programs, special ceremonies and discussions taking place in nine provinces and territories. This is all being done to generate greater awareness about the severity and continued escalation of people being affected by Eating Disorders.
EDAW will help affirm the experiences of those affected by an Eating Disorder. The week aims to educate the public about the impact of Eating Disorders, dispel the myths and stigmas associated with them and illuminate the tremendous gaps in funding and services. The ultimate goal is to motivate decision makers in positions of influence to provide, among other things, better and more affordable prevention and treatment options, enhanced training for professionals and greater support for caregivers.
To engage in our #ShowUsYourPurple social media campaign and for a complete listing of events taking place across the country, please visit the EDAW website at www.nedic.ca/EDAW.
Join us February 1 through to February 7th to help shine a light on this debilitating mental illness. Those suffering, and their families, need your support. Please consider donating to one or more of the participating organizations. Your support can make a difference to many lives. We can do better. We must do better.
About the partners behind the Eating Disorders Awareness Week campaign:
National Initiative for Eating Disorders (NIED) is the voice for Canadian families, caregivers, and individuals who are affected by Eating Disorders and other co-morbid and concurrent diagnoses. NIED helps caregivers, patients, and practitioners fill gaps in care through education and by highlighting better practices in prevention, health promotion, and treatment. www.nied.ca
National Eating Disorder Information Centre (NEDIC) operates Canada’s only national Toll-Free Helpline and Instant Chat services providing information on treatment option and/or support to people across Canada either directly or indirectly affected by disordered eating and related concerns. www.nedic.ca
Founded in 1918, the Canadian Mental Health Association (CMHA) is the most established, most extensive community mental health organization in Canada. Through a presence in more than 330 communities across every province, CMHA provides advocacy, programs and resources that help to prevent mental health problems and illnesses, support recovery and resilience, and enable all Canadians to flourish and thrive.
Looking Glass Foundation’s programs and services decrease isolation, instill hope, and sustain recovery for individuals across British Columbia who are impacted by eating disorders: www.lookingglassbc.com
Body Brave delivers innovative local and national services that address the major gaps in resources for eating disorders, in collaboration with those with lived experience and our community partners. www.livingbodybrave.com
Madame Sophie Grégoire Trudeau’s special video message to attendees of NIED’s Eating Disorders Awareness Week 2018 event on the Hill. Once again, we thank Madame Grégoire Trudeau for her heartfelt and inspiring support.
NIED was thrilled to have the following organizations join us:
Hopewell Eating Disorder Centre Ottawa, Alyssa Stevenson Eating Disorder Trust of Manitoba, Health Canada, Mental Health Commission of Canada, Children’s Hospital of Eastern Ontario, The Royal Ottawa, Public Health Ottawa, University Health Network of Toronto, Public Health Agency of Canada, Canadian Mental Health Association, Canadian Association of Social Workers, Canadian Alliance for Mental Illness and Mental Health, Emily Murphy Non Profit Housing Corporation, Ontario Centre of Excellence for Child and Youth Mental Health, and the Youth Services Bureau.
Thank you all for making our 15th visit to the Hill so special, inspiring and memorable!
On November 28, 2017, at the CAMH Difference Makers (Ontario honourees) event, NIED founder Wendy Preskow was introduced as one of 150 Leading Canadians for Mental Health (out of over 3,700 nominees!). An image from the event is on the left (left to right): Lynne Koss, co-founder, NIED, Jim Treliving, Chairman, Boston Pizza and National CoChair, CAMH Difference Makers, Wendy Preskow, founder of NIED and CAMH Difference Maker, Chris Summerville, Executive Director, Manitoba Schizophrenia Society.
Parliament Needs To Address Eating Disorders statement made to the House of Commons, by Ms. Carol Hughes (MP, Algoma-Manitoulin-Kapuskasing), on February 8, 2017:
For Immediate Release:
February 8, 2017
PARLIAMENT NEEDS TO ADDRESS EATING DISORDERS: HUGHES
Ottawa – Misunderstood, inadequately treated, and underfunded – eating disorders are considered the deadliest of mental illnesses since they are twelve times more likely to lead to death than any others, according to Algoma-Manitoulin-Kapuskasing MP Carol Hughes.
Hughes addressed the House of Commons to draw attention to her motion that calls on parliament to work with the provinces, territories, and indigenous communities to develop a coordinated Canadian Strategy on Eating Disorders.
“Last week I hosted an event in support of the National Initiative for Eating Disorders,” said Hughes. “This not-for-profit coalition works to increase awareness and education for the chronic situation facing sufferers of eating disorders and their families.”
Hughes noted that recovery is possible and starts with understanding for everyone involved.
“Seeking help is a courageous step and there is a big role for parents, families, and significant others to play,” said Hughes. “It is important that parliamentarians add their voices to the work being done to combat negative body image and improve awareness, research, and best practices for the treatment of eating disorders.”
Hughes hopes the motion will receive broad support from all sides of the House. She notes that the motion was originally sponsored by Rivière-des-Mille-Îles MP, Lauren Liu in the 41st parliament.
For More Information: Jamie Burgess, Office of Carol Hughes, 613-996-5376 – email@example.com
December 5, 2016: Press Release on MPP Teresa Armstrong’s introduction of a bill in the Ontario Legislature to proclaim the first week of February each year as Eating Disorders Awareness Week in Ontario.
NDP MPP Armstrong to introduce bill to proclaim Eating Disorders Awareness Week in wake of Auditor General’s Report
Queen’s Park – London-Fanshawe MPP, Teresa Armstrong, will introduce a bill to proclaim the first week of February, “Eating Disorders Awareness Week,” after the Auditor General found that in 2015/16, children had to wait more than three months to receive help for severe Eating Disorders.
“Too many Ontarians are suffering in silence from these potentially fatal disorders and it’s time we begin to shine a light on this devastating mental health challenge and educate the public about them,” said Armstrong.
Armstrong cited last week’s Ontario’s Auditor General Report that noted, “…the lack of needed services in Ontario between 2011/12 and 2015/16 resulted in the Ministry spending almost $10 million to send 127 youth to the United States to obtain mental health services – primarily for severe eating disorders – as the needed specialty services were not available in Ontario.”
“Sadly, Eating Disorders are on the increase at a disturbing rate, affecting a growing number of men and women, and a growing number of children,” said Armstrong. “This government is failing families and children. It’s time to tackle this problem head-on, and ensure that our health care system is there for Ontarians when they need it. My hope is that this bill will be a good first step towards healing. We are going to help those suffering through this day of awareness by letting them know they are not alone.”
The NDP MPP was joined by Wendy Preskow, Founder and President of NIED – National Initiative for Eating Disorders, and Dr. Blake Woodside, a psychiatrist with Toronto General Hospital Eating Disorder Program.
“Eating Disorders have the highest mortality rate of any mental illness,” said Preskow. “In recognition of the gaps in current health care services, delays in treatment, lack of funding, inadequate information and education in all levels of government, and for healthcare professionals, schools, and the public, NIED’s ultimate goal is to implement immediate action and change.”
“Families are not the cause of eating disorders despite popular thought. In fact, families are the most important part of recovery for those suffering,” said Dr. Woodside. “The $10 million the Liberal government spent sending 127 youth to the United States for help could have helped more than 500 Ontarians suffering from Eating Disorders.”