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Eating Disorder Treatment Worked - Why I Will March on Sept 30

8/31/2014

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by Jennifer Denise Ouellette

In early 2012, my happy, healthy, bright and well-loved youngest-of-four 17-yr old daughter began to lose weight rapidly and experience a lot of stomach issues—the foods on her can’t-eat-this-it-hurts-my-stomach list quickly became longer than the list of what she could eat. Our pediatrician, a savvy and sensible woman, talked to my daughter about these issues over several visits and within a couple of months, after ruling out other possible causes, came to the conclusion the diagnosis was anorexia nervosa.

The doctor told us we would be going to the topnotch UCSD Eating Disorder Center for Treatment and Research. When I asked if Aetna would cover it she said she would fight for it. She explained UCSD was the only local facility utilizing a Family Based Treatment (Maudsley) model and research showed that to have the best chance for success. Thankfully, Aetna quickly agreed to write a single-case agreement and treatment started within a week.

Recovering from anorexia nervosa is never easy; eating disorders are brutal, persistent and misunderstood by most of society.  You didn’t know they are genetic, biological, brain-based disorders thought to be triggered by a period of malnutrition?  You are not alone. Fighting stigma is hard when you are also fighting for your own or your child’s life.


My daughter had an early diagnosis, top-notch treatment and she still lost a semester of high school and one of college to her disease; she continues to be followed today to ensure her recovery stays solid. She fought hard to be where she is today (15-months of independent recovery and completing college out-of-state) and she and we are the lucky ones—we’ve had access to treatment that is evidence-based and that we can afford.

I have an entire tab on my blog devoted to our journey that began with this post--my daughter encouraged me to share our story and I am happy to say our openness has helped others.  It is this openness that leads me to immerse myself in the world of advocacy and activism and use my experience with social media to raise my voice and help others raise theirs.

Our story is atypical; I’ve not spoken to anyone else whose path has been this direct. Most struggle with uninformed physicians which delays diagnosis. Most have to search, often fruitlessly, for a treatment program that is both evidence-based and accessible. Most have to battle their insurance company endlessly. Most have to follow paths far more rugged than ours (which was decidedly no walk in the park).

I will march because parent pioneers like Laura Collins deserve to know there are those committed to carrying on their work. I will march for the opportunity to recover my daughter had not to be an anomaly. I will march for the access to treatment every person affected by an eating disorder deserves. I will march because I know too many mothers who have lost their children and too many who face that prospect. I will march because the researchers who have taught us much in recent years need and deserve funding on par with what other diseases get. I will march so people will understand this disease has nothing to do with vanity or choice and everything to do with brain wiring.  I will march to ask my representatives to pass the FREED act. I will march because eating disorders are serious and there is hope.

On Sept 30 I will be marching in the first M.O.M (mothers and others) March in Washington, DC. We must also lobby on October 1 with the Eating Disorders Coalition (EDC) so our Members of Congress and Senators hear our voices. Changes to fund ED research and treatment start with Congress.  Our voices will be heard! Please register for EDC Lobby Day and join us in making a difference.



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Will You March With Me on Sept 30? It Would Mean the World

8/28/2014

1 Comment

 
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by Becky Henry

Why am I marching on Washington D.C. on September 30th, 2014 in the M.O.M. March Against ED and Lobbying with the EDC on October 1st?

Twice I’ve had the empowering opportunity to lobby with the Eating Disorders Coalition and share my painful stories of having a child with an eating disorder. I was blown away by the compassion and interest of my representatives when we met with them.  Interestingly, each of them shared that they knew someone with an eating disorder.

This chance to use our voices and share our stories is an incredible opportunity and it was made so easy because the people at the Eating Disorders Coalition know what they are doing and train us that day!  I would have never done it on my own.

Here is some of what I’ll be sharing:
  • It took 2 years to get my daughter diagnosed with an eating disorder.  THAT IS WRONG. 
  • She is still sick. THIS IS EVEN MORE WRONG. It’s been 14 years. She no longer speaks to us. 
  • Health Care Providers are given far too little information about eating disorders. This makes it hard to diagnose people and refer for effective treatments.

Far too many professionals have been taught outdated information about what causes eating disorders. The fact remains, NO ONE KNOWS. But many believe myths and that does HARM.

Most people do not know you cannot tell by looking at someone if they have an eating disorder.

Even professionals and advocates in the field of eating disorders can fall into believing that all really thin people have eating disorders. And many don't recognize that those of a "normal" size and larger sizes can have seriously malnourished brains and organs.  

  • Parents have been pushed aside from treatment.  Evidence shows us that when parents are included in treatment, the outcomes improve and treatment time shortens. The chemical dependency field has known this for over 3 decades. We need to catch up.
  • There remains far too much stigma and shame about these biological brain illnesses. And it’s time for parents to step up and speak out.  We are coming out of the shadows and silence to make our voices heard.  Without shame. We are changing the course of eating disorders treatment by speaking out in numbers too big to ignore anymore.

Please join me in marching and lobbying to push for mandatory education on these most deadly of all mental illnesses so that maybe we won’t ever hear another under trained therapist say, “If it weren’t for pathological parents, we wouldn’t have eating disorders.”  That is doing harm and this has to stop.  

You can make a difference by showing up. It would mean the world to me. I still have hope that one day our daughter will be back in our lives.



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Anorexia Took Her Away - So I Will March Sept 30 in D.C.

8/25/2014

6 Comments

 
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by Debra Schlesinger

My daughter and only child  Nicole  passed away 11 years ago due to heart failure from her long 10 year battle and struggle with anorexia nervosa. Anorexia took her away from me and everyone who loved her. She left behind her beautiful daughter Hannah, a true miracle and gift from God. Hannah does not remember her mother .

Nicole was intelligent and beautiful inside and out. She was kind and sweet with an amazing smile that would light up the room. I was truly blessed to have had her for 27 years! Nicole’s dream was to be a doctor to help those who struggle with eating disorders (ED). That dream never came true.

Nicole’s eating disorder took hold of her when she and I went on a mother-daughter bonding Weight Watchers diet. She was just entering University of California Berkeley at the time. Nicole was not overweight. My daughter looked great, but had low self-esteem and body issues. She became obsessed with dieting and exercise and the perfectionist syndrome. This was the beginning of the "demon" of ED taking hold of her life.

In the ten years Nicole suffered from anorexia, she was in and out of various treatment centers roughly ten times. The last center was Renfrew where she went after her miracle daughter was born. We had high hopes this round of treatment would save her and she would eventually recover.  Nothing could have been further from the truth. She spiraled downward from that point on with the dual demands of being a new mom and her ED.

On April 6, 2003, my daughter passed away quietly at home with her husband and daughter. She woke up that morning not feeling well and decided not to exercise but get some needed rest. A few hours later her husband tried to wake her up, but she was already gone. My life as I once knew it was changed forever.

I chose to live. To be here for her daughter Hannah. And to reach out to help others as I have for the last 7 years with the Eating Disorders Research Center (EDRC). And now I'm the founder of an online Facebook Group MAED (Mothers Against Eating Disorders)  which mothers can join for support. 


I did not have this kind of support at the time I was dealing with Nicole’s illness. In fact, I was blamed for her eating disorder by everyone. Back then, many thought that parents caused the illness, which is wrong.

So on Sept 30, 11 years later, I will be marching in the first M.O.M (mothers and others) March in  Washington, DC. I will march in memory of my daughter and in honor of everyone else who has lost someone to an eating disorder. For the families that are grieving the loss of a loved one.

We must also lobby on October 1 with the Eating Disorders Coalition (EDC) so our Members of Congress and Senators hear our voices. Change to fund ED research and treatment starts with Congress.  Our voices will be heard! Please register for EDC Lobby Day and join us in making a difference. No one should lose a child to an eating disorder.

No parent should ever outlive their children.
No parent should have to bury their children.
When a child dies, the parent has two choices: to survive or to die. 



I chose to live and to help others. 


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