Monday, August 31, 2015

Advocacy Mondays with Judy Krasna

1. How did you find your path to parent advocacy?

Trust me, I never set out to be a parent advocate. After I started helping other parents find treatment for their children, I came to realize that my own frustrating treatment experience was the norm and not the exception. I became extremely frustrated at the lack of effective treatment here in Israel and at how parents were either marginalized or blamed altogether; and at some point, almost as a knee jerk reaction, I threw my hat in the ring as a parent advocate. I do not want any parent to feel as helpless and as scared as I was, and I don’t want to accept the current treatment situation as “the best that we can do”. There is better, and I am working to try and get better eating disorder treatment for Israeli patients and families. 




2. What does your advocacy work consist of/how do you define advocacy?

To me, advocacy is about supporting people who need help and trying to promote change by fixing faulty or broken systems.  Here in Israel, I am working with the Israeli Association for Eating Disorders to try and show them how parents can offer them perspective and experience that is beneficial and valuable when it comes to improving patient care. I am also trying to influence decisions that affect eating disorder treatment across the country.

I write a blog that talks about my daughter’s anorexia from my vantage point as a mom because I want to send the message that it’s okay to talk about eating disorders, they shouldn’t be stigmatized or swept under the rug. I also want to bring forth a better understanding of eating disorders and those who suffer with them.

I work one on one with parents, giving them guidance on where to find the best treatment and eating disorder resources, how to avoid pitfalls, and trying to empower them to whatever degree I can. I have a lending library of great books on eating disorders that I have bought over the years for the purpose of reading them and then passing them on to others. The more knowledgeable we are as parents, the more empowered we are to help our children.

On a more global level, I am a co-chair of the Academy for Eating Disorders’ Patient-Carer Committee (along with F.E.A.S.T’s own Leah Dean). This is an exciting new opportunity for patients and parents to raise our profile within the AED and to allow for the exchange of ideas between parents, clinicians and researchers. We are working on getting eating disorder resources/information to the people who need it, on improving medical care standards, and on other worthwhile projects which have the potential to benefit the parent community.


3. What change do you hope to affect?

I hope to make parents feel less scared and less alone, and I want them to have access to the best possible treatment for their child. To this end, I am trying to build a treatment database of both public and private treatment options in Israel. I am trying to push Israeli treatment centers to start using FBT, because some of the methods that are used here are not evidence based and have the potential to do more harm than good. I hope to make clinicians see that parents who have a loving, healthy relationship with their child should be pulled closer in treatment and not pushed away, and that we parents have perspective and knowledge that can help them improve patient care.



4. What are some of the challenges/frustrations inherent to this type of advocacy?

In Israel, we are more or less two moms fighting an entire professional community in a fervent desire to affect desperately needed change. Too many people aren’t getting treatment at all, or they are getting ineffectual treatment. Too many people are falling through the cracks. The professional community has many collective years of experience, and I am just a mom who is not even a native Hebrew speaker trying to tell them that in my non- professional opinion, some of the methods, practices, and systems that they are using are outdated or not getting the job done well enough. Who am I to tell them this? Especially when many of these professionals view parents as the root cause of our child’s eating disorder and already consider us to be public enemy #1. Under these circumstances, it’s hard to advocate for better treatment, but we do it anyway.

On the public front, everyone seems to believe that the thin ideal and the media is causing eating disorders and no one is all that interested in hearing that science is proving otherwise. So educating people about anorexia is especially hard because first you have to wipe out their preconceived notions. 


5. Top 5 things you would share with a family facing a new diagnosis?

1.     Don’t choose the least expensive treatment or the most convenient treatment, choose the best treatment. You only get one shot at treating an eating disorder while it’s still in the initial stage, make it count even if it strains your bank account or keeps you in the car for hours every day.

2.     Recruit whatever help you will need to get through the next few months. Lean on your family and friends, get people to send in dinner or cover your carpools or take your other kids to a movie or do whatever it is that you no longer have the time to do. There is no shame in asking for help. If someone who you love needed you, you would be there for them. Now is the time to let them be there for you.

3.     EDucate yourself. Knowledge is power. You have to know what you are fighting against so learn everything you can about your child’s eating disorder and how you can help him/her beat it. Check out the resources section of the F.E.A.S.T website.

4.     Join online parent forums. Around the Dinner Table was a lifesaver to me. Friends and family are great, but there is nothing like the support that you get from someone who has walked a mile in your shoes and who truly understands what you are going through. The practical advice that other parents offer is truly invaluable.

5.     Use your instincts. If you have doubts about the efficacy of your child’s treatment or about the methods that they are using, ask questions. If you don’t like the answers, consider making a change. I wish that I had followed my instincts, which were screaming at me that the place where my daughter was being treated was only making her eating disorder worse. By the time we pulled her out, so much damage had been done.

Most of all, hang in there. Things are going to get worse before they get better, but they WILL get better.













Judy Krasna, originally from the US, currently lives in Israel with her husband, her 22 year old triplet daughters, and her 13 year old son. She ia party planner who helps people from abroad celebrate their life cycle events in Israel. 

When one of her daughters developed anorexia, Judy and her husband were forced to navigate the treatment system in Israel alone and without support. Judy became a parent advocate, helping other parents find treatment for their children and offering them advice based on her own experience. A few years ago, Judy began a blog on Times of Israel on the topic of her daughter's anorexia http://blogs.timesofisrael.com/author/judy-krasna/ and more recently, Judy began working with the Israeli Association for Eating Dis
orders as a parent consultant. She is a co-chair of the Academy for Eating Disorder's Patient Carer Committee. 

Wednesday, August 26, 2015

Parents and Carers: Please consider participating in this survey by Sept 7th, 2015

Parent/Carer insight sought to assist in developing early identification resources.

The team at the Victorian Centre of Excellence in Eating Disorders are currently developing an early intervention resource package in direct response to feedback provided by parents and carers. The aim is to have the package available for families and carers at the first point where they seek help.

This resource specifically aims to assist parents or carers to determine how concerned they should be about their young person; what eating disorders are and are not; when to escalate access to treatment; where to seek treatment and what to expect; and what parents can be doing at home in the meantime.

A focus group was undertaken with 15 parents and they are now wanting to expand on the very valuable learnings gleaned from the group through wider survey.

So, if you could please take the time to take the survey and to forward (via the link below) on to any families you think will be willing to assist with the research.

Please note that the survey closes at 5 pm on Sept 7th, 2015

https://www.surveymonkey.com/r/CEEDFamilyconsultation

Looking back, what did you notice first?  What were the early signs or points of concern?




Wednesday, August 19, 2015

Why it's time to Show Up, STAND UP for Eating Disorders


By: Cherie’ Monarch

This monster came from nowhere. It swooped into your life. It blindsided you. It crippled you or paralyzed your loved one. It held them captive and made them unable to see. No one understands. No one gets it. You try to explain to friends and family. They think it's a choice. You try to enlist the support from your medical doctor. They just think it's a phase. You are desperately calling insurance companies trying to get them to understand the medical necessity. The urgency. You are battling for your life. You're battling for your loved ones life. Their response? You have to be really sick to get treatment. Its a race against time. You are spinning. Gasping for air. Trying to find somebody who will listen. Somebody who will help you breathe. Somebody who will understand. Somebody who will hold your hand.


Imagine

Imagine you are standing on the west lawn of the Capitol of the United States. You're overlooking The Mall and the Washington Monument. You are in the place that stands for unity, freedom, equal rights, and understanding. Imagine you are standing there with thousands of people that get it. They have walked a very similar journey. They have felt your pain. They have felt your desperation. Imagine holding their hand. Suddenly the isolation and the loneliness disappears. Now you can breathe.


Share

Now imagine that you have the opportunity to share your story. Your journey. Your battles. Your suffering. You are giving a face and voice to eating disorders. A voice that has been silent for far too long. Now imagine that people actually start listening.

That is what the March Against ED is about.


Its time to end the silence! Its time to create change!

The time has come to unite and end the silence around eating disorders. To end the shame, the stigma, the misinformation. To ask for our medical practitioners to be EDucated. To ask for all to have access to best practice care.

Over 14 million people in the United States suffer. Yet no one is talking. Only one in 10 receive treatment. Yet no one is talking. It is estimated that 20% will die within 10 years of diagnosis if left untreated. Yet no one is talking. Someone dies every 62 minutes. Yet no one is talking.

Eating disorders have the highest mortality rate of any mental illness

Yet no one is talking.

The time has come to start the conversation. Eating disorders are not a choice, but are genetically based, biological illnesses. Eating disorders are not about body image, being thin, or vanity.

We cannot afford to continue diluting the life and death seriousness of eating disorders. Eating disorders look like a death wish. One that threatens the sufferers mere existence; threatens their hopes and dreams for the future; threatens their ability to bear children; threatens the functioning of every one of their vital organs; and paralyzes families mentally, physically, and financially.

March Against ED!

On October 27 we will gather in Washington DC for the second March Against Eating Disorders. We will stand on the Mall united. Parents, sufferers, families, clinicians, teachers, providers, researchers and legislators. Joining hands. The landscape has never been better. Annas Law has bipartisan support in both the House and the Senate. Together we have the opportunity to start the conversation and save an untold number of lives. But we must show up. We must stand up.


If we don't stand up for ourselves or for our loved ones, who will?

So my plea to you is this we each must do one thing. One thing to create change. Please take two days out of your life for the March Against ED and EDC lobby day to share your story, raise your voice, and give eating disorders a face. We have been silent for far too long.

The silence will end October 27.
The time is NOW.

Register NOW. www.MarchAgainstED.com

Note to Parents, Familes, and Carers


I know many of you are in the throes of supporting a child or loved one with an eating disorder. You would love to attend the March, but feel that there is no way this is possible. My plea to you is this… Attending the March could be the best thing you do; for you and for your loved one. This will give you the opportunity to meet moms and families walking similar journeys. The opportunity to put on your oxygen mask. The opportunity to feel like you're not so isolated, so alone. It will empower you. So if you have the ability to take two days out of your life, do this for you. Do it for your loved one. Do it for the MILLIONS that deserve the chance for recovery. Do it so you have the strength and courage to continue the fight!


Thursday, July 16, 2015

“Same Brain, Different Operating System”










I love metaphors. A few days ago on I scrolled by a meme on Facebook related to autism awareness.  It got me thinking about eating disorders and brain science and my work with F.E.A.S.T., and I thought it would be a great title for a blog entry, so here goes…

I’m sorry to disappoint anyone, but this isn't going to be a blog on neuroscience or technology or even directly about eating disorders - it’s about advocacy and relationship building and how F.E.A.S.T. works to support our mission and achieve our goals.

I have been puzzled by the latest flurry of "old vs new" attitudes between ED advocacy groups with similar goals which is occurring on social media.

Of course some groups are older than others, but that doesn't mean that a "new" approach is any better than another group's "old" approach. Every group needs to work according to their own operating structure, which will be different, not "good /bad" or "old /new."

Basic Advocacy is Simple.

Anyone can advocate for something they believe in. On the surface it is a simple recipe:

1. State your mission.
2. Set your goals.
3. Do your research.
4. Plan your strategy.
5. Get to work.

Along the way, you will probably find others with the same goals. Collaboration is good and can broaden your voice; but, as a wise friend once told me, collaboration is about relationships, and relationships are far from simple.

F.E.A.S.T. began with simple. A group of parents found each other through whatever networks they could - conferences, online groups, letter writing, phone calls, etc. They identified a similar mission and similar goals and they got to work. The “Around the Dinner Table” forum was the result of that first effort, and continues to be a place for caregivers to connect and share resources, experiences, and support each other through the crisis that is a loved-one with an eating disorder.

This group realized that the ineffectiveness of many eating disorder treatments, the lack of research, the lack of support for families and the stigma around mental illness were creating huge barriers to understand and treating eating disorders, and were breaking apart families needlessly.

By creating F.E.A.S.T., choosing a Board of Directors, establishing a set of Principles, adopting by-laws, and filing for legal status as a non-profit organization, F.E.A.S.T. was poised to start building relationships with other organizations in the eating disorder community. As F.E.A.S.T.'s membership grew, the voices of families and caregivers began to be heard by professionals and other advocacy groups in the field.

F.E.A.S.T.'s Primary Mission is to Empower Caregivers.

We do this in three ways:

1. We provide peer support on the “Around the Dinner Table” Forum.
2. We provide access to facts and resources for caregivers to educate themselves and others about eating disorders.
3. We provide public spaces for discussion of ideas and advocacy issues.

F.E.A.S.T.’s discussion spaces are public because we believe transparency fosters a broader dissemination of ideas, and a broader point of view for all stakeholders in the eating disorder community.  F.E.A.S.T. does not censor discussions even when they do not align with our principles and our discussion spaces are moderated because we hold high standards of conduct.

Censorship is not the same thing as refusing to tolerate bad behavior. Kindness and civility is our first and most important rule and we will step in to stop personal attacks, or self-promotion and will occasionally close down a thread when a discussion becomes disrespectful, hurtful, or when others use F.E.A.S.T.’s  spaces to promote their own agendas, events, or initiatives without permission.

Censorship is also not the same as setting requirements for participation. Our ATDT Forum is public for anyone on the internet to read; however, only caregiving members may join the discussion. We have important reasons why we do this, but that is the subject of another blog!


Relationships are Complicated.

F.E.A.S.T. believes that educating caregivers gives them the tools to advocate, and we are excited to see new advocates starting new groups with similar goals. Unfortunately, sharing goals doesn't always make for effective collaboration with groups that have different missions, different strategies, and different operating procedures. Alliances work when relationships work. Relationships work when we respect each other's differences.

F.E.A.S.T. believes in a collaborative approach to advocacy that requires mutual respect.

F.E.A.S.T. welcomes opportunities to collaborate with other non-profit organizations in the eating disorder field, and individual advocates and other advocacy groups working on specific initiatives. These proposals are brought to a committee or the F.E.A.S.T. Board and discussed before a decision is made to partner with or join an initiative, support a position paper, publicize an event, etc.

F.E.A.S.T. understands that challenging an idea is different from challenging an organization or an individual. F.E.A.S.T. believes in having difficult conversations in order to open doors and build relationships.  F.E.A.S.T. has never shied away from criticizing ideas that contradict our principles or scientific fact, but we do not find it productive to do so by publically putting a potential ally on the spot, or by demanding insight into an organization’s internal operations or discussions.

F.E.A.S.T. plans its advocacy efforts through our Board of Directors, Committees and Task Forces. We welcome new ideas, constructive criticism, and individuals who want to join our volunteer pool and help with specific tasks or programs. F.E.A.S.T. is only as strong as its members and its relationships and we hope you will join us or work alongside us in the spirit of respectful collaboration.

Leah Dean
Executive Director, F.E.A.S.T. 


Friday, May 15, 2015

Nine Wonderful Truths

F.E.A.S.T. is committed to a coalition-building model of advocacy work.  It is one of our bedrock principles: a committed to a coalition-building model of advocacy work that requires mutual respect among caregivers, professionals, and patients.

In April, a group of representatives from 13 eating disorder advocacy groups and professional organizations sat around a table in Boston.  A group comprised of professionals, caregivers and patients sat around this table, eating lunch, and talking about points of connection and how best to work together in service.   The starting point, it was decided, would be the basics, identifying a clear and unified message that all agreed upon.

This is important.  Very important.  A unified message based on current scientific knowledge about a group of illnesses that has been poorly understood for so long.  This is so beneficial for families. It is a new baseline.  It is a place where families can start and it can inform what they ask for and what they can expect.

To all those at the table:  It was an extraordinary effort and the mutual respect was palpable.

Here are the basics.....Nine Truths (pdf for printing):

  

Truth #1: Many people with eating disorders look healthy, yet may be extremely ill.

Truth #2: Families are not to blame, and can be the patients’ and providers’ best allies in treatment.

Truth #3: An eating disorder diagnosis is a health crisis that disrupts personal and family functioning.

Truth #4: Eating disorders are not choices, but serious biologically influenced illnesses.

Truth #5: Eating disorders affect people of all genders, ages, races, ethnicities, body shapes and weights, sexual orientations, and socioeconomic statuses.

Truth #6: Eating disorders carry an increased risk for both suicide and medical complications.

Truth #7: Genes and environment play important roles in the development of eating disorders.

Truth #8:  Genes alone do not predict who will develop eating disorders.

Truth #9: Full recovery from an eating disorder is possible. Early detection and intervention are important.











*The Nine Truths About Eating Disorders is produced in collaboration with Cynthia Bulik PhD, FAED, Distinguished Professor of Eating Disorders in the Medical School of the University of North Carolina, Chapel Hill, based on her 9 Eating Disorders Myths Busted talk at the National Institute on Mental Health in 2014.