Canada: The Very Brink of Death

Eating Disorders are brain-based, biological illnesses with a strong genetic component. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Helpless

My name is Tara & I live with my husband and two daughters Hannah (16) & Quinn (11) on Vancouver Island, BC.  Our oldest daughter was diagnosed with anorexia in November 2012 at the age of 14.

Prior to diagnosis our family led a “normal” life, we worked, took our girls to extracurricular events, socialized with friends, volunteering at school functions etc.  When we had days off together you would find us up the mountain or a beach spending time together, enjoying life.

November 19, 2012 a simple call from the school reporting Hannah had missed a class created a string of events that blew Hannah's secret open.  Quickly I was seeing clearly the answers to all the nagging question that I had been asking myself.  Hannah had an eating disorder.  Life as we knew it was about to take a drastic change.

In less than a week we had seen our family doctor and agreed and diagnosed Hannah with anorexia. Her name was being referred to those who could help.

Two and a half month later, intake information appointment at MCFD only to be sent somewhere else, referrals to psychiatrist and dietician still sit on the wait lists, numerous calls to ED organizations, a private ED treatment center (we did not meet age criteria) Hannah was sicker than I ever dreamed possible.  My daughter was dying and nobody could help, we were on the wait list.

Feb 8, 2013 I looked into Hannah's eyes and saw death, our doctor saw it and told her.  I was scared, he was scared and the ED wanted to take Hannah from us. Still on the wait list at BCCH for a consultation appointment, I could not wait for help from them.  Armed with Gatorade and Boost, blankets to keep Hannah warm and our doctor’s home phone number I spent the next week at Hannah’s side, pleading with her to take a sip every few minutes. I slept with her at night so I could keep a hand on her chest so I would know immediately if she stopped breathing.  Her breathing so shallow I hardly slept for days because I thought every breath was her last.

We were finally seen at BCCH mid-March.  I had taken a leave from work to be home full time to refeed Hannah.  We as a family (and it is a full family effort) had managed to pull her out of the critical medical state she had been in.  We had her eating food and she was gaining weight.  BCCH added us to their out patient program.  We would travel back and forth to Vancouver once a week.

Eight months of outpatient treatment and they are comfortable to discharge her as a patient.  I have confidence in our family doctor and I have secured a therapist at NARSF in Nanaimo.  I hope and pray we will continue on the recovery road.

Things are okay(ish) for the next while, Hannah struggles but is stable and she likes her therapist who she sees and has returned to school.  Few months later her therapist must leave for personal reasons, there is no replacement. I now fight for somebody new; I'm stuck in a government nightmare of boundary lines.  There is nobody to see in Nanaimo & Duncan is not our catchment area.  Few months later the position at NARSF has been filled.  We hope that there is a connection between Hannah and her new therapist.

The last year has been a constant struggle to keep Hannah stronger than the Eating Disorder.  It haunts her and is gaining strength.  We continue to fight for appropriate treatment and programs. We are unable to access some programs because we live a five-minute walk north of a boundary line, she is unable to attend school because of severe anxieties, and her therapist isn't connecting.

As February 8 approaches, the day I have named “Living Day”, the day almost two years ago Hannah surrendered enough to follow my lead and take a sip of Gatorade then another and then one of Boost and lived through the day, as that day approaches I am scared. I am scared because this nightmare is not yet over, relapse is strong and two nights ago I saw ED alive and well in Hannah, she refused to eat. Today I try to make arrangements to have her put on a wait list for a program that she is not yet old enough to participate in, but maybe by the time she turns 17 her name will be at the top of the list . . . I am unable to write an end to this yet but I know what I am fighting for and I hope our families next 'Living Day' will be one to enjoy.

Canada: Eating Disorder Awareness Week (and beyond) Action

Storytelling Template for International Eating Disorder Action Blog CANADIAN HEALTHCARE ACTION

Purpose: These stories will be used to bring attention to the myriad ways in which the healthcare system fails those with eating disorders. They are also used to highlight that full recovery is possible in properly functioning medical and treatment systems.  This balance is important.

Responsible story telling includes not using sensational photos or numbers as these may be subverted for unsafe use and we don’t want that. We also don’t want to reinforce a message that only those who are dramatically thin are sick.

WHO: Briefly tell us who you are and who your loved one is. The more people realize our families/children are just like theirs, the more likely they are to see themselves in our stories.

WHAT: What is the diagnosis, how long they/you have been ill and where the person is now in terms of recovery? Try to tell the story using medical language that people will understand.

WHERE: Be specific about where your healthcare is delivered and who is responsible for delivering that healthcare. Please include your postal or zip code.

WHY: This is the bulk of your story—we want to highlight places along the way that were pivotal---delay in diagnosis, waiting times for services, lack of services, uninformed physicians, hospitals, etc. Discuss lack of education or outdated information given to you by clinicians. If you have gone outside the system discuss the tremendous financial and other sacrifices you have made. Conversely, if you have a story where things have gone well, share what makes your story different from most of the stories we encounter.

FINAL THOUGHTS: We are trying to paint a visceral picture so small details can be important. The word limit is 500 words and if you have non-triggering photos to include that is very helpful. Use of your own name is great, but it’s absolutely fine to use pseudonyms. The pieces will be edited, but overall content/message will not be altered.

Email your story to iedaction.global@gmail.com with a cc to info@nied.ca 

We will be using these hashtags on social media: #cdnpoli #EDAW2015 #IEDAction so please check and retweet these on a regular basis.

Please visit our website, like our FB page, and follow us on Twitter: Our voices are amplified when we raise them TOGETHER!

EXAMPLE

My name is Lisa and I live in Mississauga, Ontario; I have two incredible daughters, an amazing fiancé, and assorted animals. Both my girls have struggled with mental illnesses for many years. My youngest daughter has a diagnosis of anorexia, binge-purge subtype.

Though M. was diagnosed in October of 2011 at 17, we had already been enduring a nightmare for many years. From the time she was 9 or 10 years old, we spent more time in doctors offices and hospital emergency rooms than I can remember, due to complaints of constant stomach upset, constipation, lethargy.  We once spent 15 hours in the ER of Toronto's premier Sick Kid's Hospital when she was 12 because she hadn't eaten anything solid for over 2 weeks, was persistently vomiting and sleeping 15 hours per day. Her anxiety became crippling.

At 15, she started to eat "healthy.” This meant virtually no dairy, no pasta, no bread, no baked goods (and yet she would bake up a storm) and eventually no meat. Her energy levels continued to drop and her hair became dry and brittle, off we went again to our family GP who offered no real help and said she was just a "teenager going through the natural progression of working towards independence.” At 16, shopping for summer clothes and bathing suits my heart stopped and life as we knew it came to an end.  This time our GP suggested, upon discovering a terrifying weight loss of a quarter of her weight that I send my daughter to Africa to "see what starving children really look like."

At no point did our GP say “”eating disorder,” though she did say “willful,” “disrespectful,” “manipulation,” “depression,” and “conniving.”  At the end of my daughter's 16th year we were FINALLY referred to an eating disorder therapist.  Upon diagnosis we were told that on a scale of 1-10, my daughter's eating disorder was so entrenched it was a 15. We were also told that due to my daughters age, she turned 17 days after diagnosis, that we would likely run out of time to save her before the age of 18 when she would become an adult, effectively ending our parental right to save her life.

Even after her diagnosis, one that was clearly delayed due to lack of education on our GP’s part, we were never steered toward good medical or psychological information that was vital to helping our daughter. What we did experience were interminably long wait lists, being denied access to services either because our daughter was to sick or not sick enough and wholly inadequate number of beds in dedicated facilities.

Today I have a daughter who teeters constantly on the brink of medical hospital admissions and still has no real help for her eating disorder. I do what I can to find adequate resources for her and I live with the constant dread that whatever help I may find will not come in time to save my daughter’s life.

This project is collaboration with National Initiative for Eating Disorders (NIED).

Actions Taken To Date 10/25/14

	Name of Organisation & Date	Issue	Action	Status
1.	Thierry Lasry – French Eyeglasses manufacturer April 2014	TL is a high end glasses designer and launched eyeglasses called Anorexxxy.	Launched the first ever Twitter Army action to request TL to remove and/or rename the glasses– as well as over 100 comments on the TL facebook page from our ED community and beyond.  Started the IED Action Facebook group to address future actions.	Thierry Lasry acknowledged the mistake and publicly apologized.  They changed the name of the glasses. Action took less than 48 hours.
2.	TannyRaw – Online Diet Guru YouTube Tannyraw Initiated April 2014	Tannyraw is an online diet guru who promotes a Low Fat Raw Vegan Diet (LFRV).  She also sells online coaching and support.  Channels are Facebook, YouTube, Instagram.  She supports and targets many young people (mostly young women) who are often suffering from or in recovery from ED.  TR claims to have cured her ED through LFRD.  She was brought to our attention by a mom whose 18 yo daughter is recovering from anorexia and was advised by TR to ignore the parent’s concerns, stop treatment for anorexia and continue with LFRV diet.  Hopping on the internet marketing bandwagon TR set up online/in person/phone coaching business. TR has been non responsive and her followers aggressive and threatening.	Request TR to include a triggering disclaimer, to ensure no harm, to acknowledge ED and refer for help.   Advocacy approach is posting on YouTube, IG and Twitter. Posting warnings and links to ED resources on her channel and page. Alert the FDA, HHS, APHA, FCC about the dangers of unregulated, non-professional diet gurus in relation to eating disorders. Alert school officials as TR was daily posting dangerous ED and often sexually explicit videos from the school where she worked with elementary school children. Contacted over 100 news outlets on Twitter, email, FB.	YouTube removed the TannyRaw channel for several days.   International coverage by Beth Greenfield at YahooShine which has been picked up by many international papers. https://ca.shine.yahoo.com/blogs/parenting/why-moms-in-uproar-over--banana-girl---raw-diet-gurus-214504853.html TannyRaw is still promoting and online but no longer claims to cure ED and is very careful about her claims.  Her viewership has not significantly increased.  Ongoing:  monitoring her channel regularly for dangerous content.
3	ED Marketing Scams – Nick Ritchie: Online health marketer www.nickritchielive.com Initiated April 2014	Nick Ritchie is an online marketer who has opportunistically developed programs to cater for health needs including weight lifting, weight loss, health and diet – and recently eating disorders.  As with TR he has zero credentials in support for ED.  He works with another Admin Joshua Brenner with a focus on selling online ebooks and coaching supports. Claimed to be able to cure ED and that it was not linked to biology in any way.  Buy his e-book and you can cure yourself.  NR and his admin Josh Brenner threatened a young girl in treatment for AN to the point she called police.	Comments on FB page to request disclaimer for people with ED, trigger warnings, removal of harmful information.  Posts on Twitter alerting public and requesting removal of harmful ED cure claims. Alert FCC, FDS, APHA, HHS around dangers of non-professional, online marketing companies providing incorrect information to eating disorder sufferers.  Letter/email campaign to Australian Dept of Health, Australian Communications and Media Association, Australian Dept. of Therapeutic Goods. News outlets in Australia. Letter/emails to Australian tax authorities	NR stopped posting ED focused cure information on twitter, website and FB. Responses from ACMA and DOH looking into his therapeutic claims. Ongoing- no action
4	Freelee the Banana Girl Online diet guru YouTube, FB, Instagram, Twitter Initiated April 2014	The diet guru you love to hate,  Freelee has over 200K subscribers on youtube who tune in to her almost daily videos.  Some videos have over 2M views.  She became famous for promoting a fruit only mono foods diet, and later promoting a “raw until four’ diet.    She’s high profile, lots of news coverage both negative and positive, makes load of money through advertising.  She and her partner Durian (Harley) Rider are super self-promoters – shunned now by the old guard raw food and fruit only society because of their personalities and approaches.  Claims to cure ED among other things.  Targets youth. In private groups counsels young people that losing menstrual cycle is ok and ‘cleansing’, loss of hair is ‘fine’ and sticking to her diet at all costs is critical.  No acknowledgement of ED and biology or evidence based treatment.  Verbally abuses and attacks anyone challenging her approach	Alert FCC, FDA, APHA, HHS and Australia Communications, Tax and Health authorities. Multiple requests to Freelee to post trigger and awareness disclaimers – no response. Over 100 news outlets in Australia via email and Twitter. ACMA, Butterfly Foundation.  Email/Letter campaign to MP Honorable Turnbull Multiple flags and reports to YouTube for abuse and harm to children.	International coverage by Beth Greenfield at YahooShine which has been picked up by many international papers. https://ca.shine.yahoo.com/blogs/parenting/why-moms-in-uproar-over--banana-girl---raw-diet-gurus-214504853.html TV coverage - Jennifer Currently working with others on campaign to address their site. They are currently being investigated by tax authorities for abuse (this from another source). Ongoing monitoring.
5	Mirror-Mirror.org ED Information site	Mirror-mirror is an online resource that had extensive outdated information – parent blaming and lacked up to date info and evidence.	Reached out on Twitter.  Asked them to address the outdated information	Received immediate response from the owner of the site Scott Mogul who agreed and immediately hired a writer (from our ranks) to update the site. It now boasts current information, evidence based, includes focus on family involvement, links to evidence based programs. Scott regularly reaches out to us to ask for input on articles and updates and has two of our members on his staff.  FIVE STARS!
6	Rainbeau Mars – Actress turned health guru June 2014	Rainbeau Mars, Boulder Colorado is an actress turned health guru and came to our attention through her promotion of cleanses to kids.  She works primarily via Twitter, YouTube, Facebook and her website rainbeaumars.com. Her recent claim to fame are for profit 21 day cleanses and ‘cleanses’ for kids. She was profiled in national news and came to our attention when promoting a 2 week vegan cleanse challenge for kids.	Requested on Twitter, FB, Website, News outlets that Rainbeau Mars (RM) understand the dangers of promoting cleanses for kids – that cleanses are not necessary in general but for children or those predisposed for ED they are very dangerous.	We sparked an online debate – ABC News.  Generated much Twitter traffic.  No overt acknowledgement but she’s not selling a kid cleanse package. ABC News Coverage on our Twitter campaign
6	La Perla – lingerie Manufacturer June 2014	Alerted by a twitter user that La Perla had rolled out a bunch of anorexic looking mannequins.	Went viral on a #NotBuyingIT campaign that many of our members and their contacts participated in. Numerous comments on the news pieces and their FB page.	Public Apology – changed mannequins – in less than 24 hours.  http://www.nydailynews.com/life-style/fashion/la-perla-removes-shocking-mannequin-protruding-ribs-article-1.1794857 Lots of global news coverage – members did Education on many of the articles.
7	Hudson Bay Company June 2014	Launched a shirt saying “nothing tastes so good as skinny” promoted by Kate Moss.	OUR Twitter Army went viral on this – bringing the whole #NotBuyingIT world into action. Twitter Army activated, Facebook and news outlets commented on. Utilized news stories to #EDucate	Got Apology – they pulled the Tshirt. Our group got news coverage.  Statement by AED – more stories than I can fit here. http://www.huffingtonpost.ca/2014/06/24/hudsons-bay-kate-moss-shirt_n_5527119.html http://www.ctvnews.ca/business/hbc-under-fire-for-selling-skinny-t-shirt-1.1883686
8	Café Press – online customization company June 2014	Moms in MAED and IEDaction have reacted to the large number of ED related products on this website that sells self-designed gifts and items.	Twitter approach – reached out to YahooShine	News coverage in multiple places. Some items removed after the news picked up our story. http://www.dailytimes.com.pk/entertainment/30-Jun-2014/eating-disorder-themed-clothing-angers-mothers-on-twitter http://livelifeinhealth.com/eating-disorder-themed-clothing-angers-moms-on-twitter/ https://twitter.com/niedcanada/status/482979777947521024
9	Something-fishy.org Eating disorder resource and referral site August 2014	Alerted by members that one of the resource sites often appearing in search engines has outdated and harmful information about eating disorders – specifically heavy parent blaming, lack of findings from research since about 2005, lack of adequate coverage of family involvement etc.    Not clear who actually owns the site – was established by a sufferer, changed hands a few times, was bought by CRC Health in 2006 – it was managed by them until Feb 2014.	Personal emails to the new owner by a few members of the group to try to address the issues.  Subsequent twitter requests to SF owner and CRC Health (who are currently the only phone for SF and referral contact for the IOP and referral services).    Letters by about 20 people to the owner asking for the site to be updated.  Over 200 posts re the issue on Twitter and more than 50 people ‘tweeting.	Ongoing – some members are trying to get contact with SF to ask for change given their presence in the ED community. Continuing with Twitter request. Preparing packet of letters to send to CEO CRC Health.
10	J Crew Size 000 July 2014	J Crew retail store rolls out 000 sized clothing.	Advocated getting rid of such tiny sizes – used fb, email, twitter campaign.  Posting on news articles. Worked with many other individuals and organisations. #NotBuyingIt campaign.	Much news coverage – lots of outraged people. However J Crew has defended its position.   Ongoing monitoring http://www.theglobeandmail.com/life/health-and-fitness/health/j-crew-blasted-for-introducing-size-000/article19603630/ and many more articles.
11	Pearson’s  Publishing August 2014	Major educational book publishing company has questions on dieting in its exams.	Twitter – need to do email and facebook /email follow up	ongoing
12	Glassons October 2014	Glasson dept store and emaciated mannequins.	Advocated for department store to take down clothing mannequins with ribs showing and challenged CEOs statement about clothes looking ‘better on thin people’  Twitter and FB worked with many other groups	Within 48 hours they took down mannequins and issued public apology
10	Whole Foods, October 2014	Organic/health foods store in the US has a policy to give employees with lower BMI a bonus.	Facebook and Twitter – campaign is beyond  IED Action with many others writing them. We want them to remove the BMI incentive.	Ongoing
11	Gap – retailer August 2014	Gap tweeted a pin-thin model sparking a controvery online	Joined in with many others #NotBuyingIt etc on Twitter. Resulted in a sort of apology by Gap and removal of the thin model – replacing her with a slightly larger one. Sparked a ‘skinny shaming ‘ debate on line.  We also commented on news articles, Tweeted.	News coverage from the Twitter action here – many outlets picked it up.  http://www.huffingtonpost.ca/2014/08/10/skinny-gap-model_n_5666507.html
12	MOM March Against ED September 2014	First ever March on Washington DC organized by MAED, Alliance and EDC and Lobby day on the BMI issue and FREED	Actively engaged in sending out the word through IED Action fb, on Twitter and other avenues to increase coverage and participation. Several members joined the social media committee and also did much onsite work along with MAED and others.	CDC agreed to review BMI although Dear Colleague letter still needs more signatures – working on this up to October 27.   Over 2M people viewed the Tweets, IG and FB posts with over 5 M ‘impressions’ in the week up to and during the event.