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From Solitary to Solidarity: Why I Marched (and Will Continue to March) Against ED

10/25/2015

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by Joanna of the Middle Ground

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Self-reliant.

That term has stuck to me for much of my life. (That, together with my mother’s fond saying that a shark could bite off my leg and I still would refuse to cry.)

My independence is a chicken-or-the-egg kind of quality. Have I always preferred to solve my own problems? Or was the descriptor “self-reliant” innocently bestowed on me at some point during childhood, and I spent the rest of my development living up to it?

However it originated, this self-reliance ultimately became an unwitting ally for the eating disorder that developed when I was just shy of 14 years old. I don’t know why I began skipping lunch at school. All I knew was that I was in pain and confused, and I didn’t know how to tell anyone. So, I found a solitary way to cope.

Back then, I had no concept of what sort of enemy I was facing or just how vicious it would become over the next eleven years. I tried over and over again to forge a healthier relationship with food, only to slip backward and further into anorexia. Still, I told myself that there was no way my “issues” with food could be that bad.

The problem was that I didn’t know these “food issues” were actually an illness. I believed that I was to blame for incurring this hell—and therefore I deserved the pain and misery it brought me.

Of course, that is the paradox of eating disorders: The sicker you get, the harder it is to see how bad things are getting.

I finally sought help at the age of 25. But that old self-reliance followed me into recovery. Just as I’d hidden my eating disorder from my family and friends, I kept my recovery secret: I admitted to treatment without telling any of my loved ones; I assumed the burden of fighting my insurance company; I drained my savings to stay in treatment and wrest everything I could from it.

Whether help was available or not, I always preferred to do things my way—until I went to Washington on September 30, 2014.

I had decided to attend the inaugural M.O.M. March because I, like many eating disorder patients, had terrible difficulties accessing the treatment I needed. I wanted justice for myself and for others who had experienced discrimination at the hands of their insurance companies. While I did get to lobby for those issues, I also left with much, much more.

As I sat on the west lawn of the Capitol listening to the testimonies of recovered people, family members, clinicians, and advocates, I began to realize I was one member of a large community. I was in awe that so many people cared about this issue—about my issue. These people understood this strange illness, confronted the same challenges that I did, and, most consoling of all, knew just how lonely the road from an eating disorder into recovery can be.

That day I learned that countless others had walked through the same dark woods that I’d accidentally wandered into at 14, and they had made it to the other side. If I stayed close to this community, they would show me the way out.

In the end, there are many reasons that I march—among them the chance to protest the wildly unjust insurance situation that we who suffer mental illnesses face.

However, the reason I keep returning to Washington for marches and lobby days, and why I will keep coming back even after we achieve our legislative goals, is because my fellow marchers are my family. This family offers me hope—hope that help is out there, that recovery is possible, and that I’m not alone on this journey.
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Today, October 27, 2015, hundreds of people with interweaving stories will come together, bringing the solitary among us into solidarity with us.

I can tell you all about the healing power of this kind of connection—but I think you ought to come experience it for yourself.

I’ll see you there.

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Why I’m Marching

10/24/2015

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by Becky Henry, MOM, CPCC, ACC, Founder and President, Hope Network, LLC

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 I'm Marching because I've missed:

My daughters 20s.
Seeing her grow into a beautiful young woman.
5 birthdays.
5 Christmases.
Her amazing artistic talent.
Having her be part of our family.
Hanging out with her.
Sharing stories.
Listening to her laugh.
Feeling her hair.
Watching her create beautiful art.
Having my daughter love me.
Seeing my daughters be together.
Seeing my husband get to enjoy his oldest daughter.
Hearing her voice.
Hugging her.

Her life...AND when strangers ask how many kids I have and where they live, it's always awkward.

I hate that something as simple as well trained healthcare professionals could have prevented this. It’s time to change the course of history of eating disorders. We finally have a bunch of angry moms on the hill. We will no longer accept stigma, inadequate training and treatment.

Please March with me. Register NOW! www.MarchAgainstED.com







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Why I March. A Dad's Perspective.

10/22/2015

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No one understands the pain.

My daughter has struggled with an eating disorder for the past 10 years. She has been in various treatment centers for the past 7 years. During this time our family has expended a large amount of personal resources, that insurance companies refused to cover under the guise of medical necessity. It has ripped us emotionally to have to deal with the eating disorder and the insurance component has only added to the burden. Over the course of the past years, after visiting at many treatment centers, I have also met others struggling as well. I have seen many lose their life. There is a huge stigma attached to eating disorders that many refuse to talk about. I have found it therapeutic to talk openly about the struggles, but I find myself among the select few for a father. Most of the fathers that I have spoken to are embarrassed or feel uncomfortable discussing the illness.
 
I think it is time for Eating Disorders to be treated like any other illness.

It is time for insurance to recognize that this is not a disease of choice.

I March for my daughter as well as others struggling.

I March for all the dads. I March to end the silence!
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 Why I March Against ED. A Mom's Story.

10/20/2015

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By a mom...L
My 20 year old daughter has anorexia nervosa. She has had this disease since she was 12 years old,  Why she has this disease, or what causes it, is still a question that research has yet to answer.  For her, she started dieting when I was hit with breast cancer.  She was young, had not hit puberty, and was living with her Dad in another state while I received treatment.  Which by the way, insurance paid for.  No questions asked - at all. 

I was ill and was not supervising her food, or her care.  And her way of coping was to stop eating.  I did not see her for 2 months.  It was terrible to be away from her but honestly I was so sick I don't remember a lot. Her Dad called me at one point to tell me that she was hospitalized in the other State with "the stomach flu".  This, by the way, was the first opportunity  that medical professionals without training, missed a diagnosis for my daughter.  They missed the eating disorder signs.  Her Dad brought her to the hospital because she had fainted.  She had most likely been dehydrated, had low heart rate, electrolyte imbalance. But the workup and diagnosis was stomach flu.  Not only did they miss the diagnosis, the treatment was typical of most hospitals - lots of fluids - this in itself is very dangerous. Failure to recognize patients with eating disorders can lead to immediate cardiac arrest if improperly treated.

By the time I saw her, she had lost a tremendous amount of weight.  She was weak, and I did not understand why she was exercising so much.  I, at that time, knew nothing about eating disorders.  I took her to the pediatrician who said that she looked awfully thin and that I should feed her more.  Not a diagnosis - but second missed opportunity.  By the next fainting episode, she was hospitalized at the children's hospital and then sent for treatment at an eating disorders residential treatment center (RTC).  In that day and age, there were very few Centers and understanding of young children and the disorder was near to nothing.  The Center she went to was made up primarily of women with severe issues - women who along with their eating disorders, had experienced trauma such as rape.  My daughter, at 12 years old, was in therapy groups with women talking about things that turned out to be traumatizing for her. And even worse, and so very damaging, is that she learned how to be a very "good anorexic".  She learned from individuals who were very ill how to support her illness.

We were new at this and had a dual income. We had not run out of money yet.  Insurance paid part of the bills, we paid part of them. 

Now she is 20.  There is much better research about Family Based Therapy, and best practices.  BUT there is little, to no training, in medical facilities. 

My daughter has been in treatment Centers in Missouri, Utah, Colorado, Virginia - she has been in and out of hospitals for years. She is currently inpatient in a State across the country from me.

A little lesson - for a person with an eating disorder, there are different places for treatment.  The continuum of care tends to be from most restrictive to least restrictive 1. inpatient treatment (this is a hospital based program for patients needing feeding tubes, nursing and medical care 24/7).  The patients here are the most ill. 2. residential treatment center (patients lives 24/7 with other patients receiving supervised meals, group, individual, and family therapy) 3. partial hospitalization program (patient goes to the hospital during the day, or supervised living at night), and 4. outpatient team made of a) medical doctor, b) nutritionist, c) individual therapist, d) family therapist) and

Guess what - my insurance does not pay for residential treatment now.  This is a new change - Blue Cross Blue Shield Federal.  My daughter has been inpatient for 6 months.  The care she needs is residential treatment - she needs to be able to interact with peers, go on outings, practice being social.  But insurance does not cover it.  The doctors know that she needs the care so they lie to the insurance company saying that she needs to be inpatient so that she is not kicked out.  Some docs will not do this.
 
My family is out of money.  We cannot pay for what she needs - residential treatment.  My daughter now has full blown osteoporosis - at 20.  If she falls, she will break a bone, or several.  Insurance covers Forteo shots inpatient; once she is outpatient, the shots stop.  There is no hope for her bones. 

If she comes home still ill, I have been told that she will die.  I'm waiting for the day to come, any day now, for the insurance company to call and say that they are done paying.  It happens all the time.  If I get cancer in my ovaries (they are watching for that based on my history), insurance will cover my next surgery.  No doubt.

I have been getting wonderful support from families who sadly have lost their children.  I'm marching against ED for them, and for my daughter who now is still alive, but is in grave danger.

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Why I March for ED

My daughter has anorexia nervosa.  When not in treatment, she ends up in Emergency Rooms with various symptoms.  She may have a fainting spell, or heart palpitations - she goes out of fear herself, or via ambulance.

Can you imagine what it might be like if your relative was having a heart attack, and when to the ER, and received a workup for gallstones?  Your relative might die. The same thing happens when a person with an eating disorder goes to the hospital and untrained medical personnel treat the person for dehydration or for a possible neurological condition.  The docs may miss the signs of an eating disorder low heart rate, orthostatic, dry hair, nails, and skin, loss of hair on head,- excessive hair all over body known as lanugo, blue feet and hands, anemia, and instead give the person several boluses of fluid.  This can trigger severe electrolyte imbalance and potentially a heart attack.  It happens. They may send the person home, missing the opportunity to counsel the person appropriately, providing diagnosis, resources and appropriate transition to care to save their life.

I am in another State and am afraid that the next time this happens to my daughter and I am not there to train the medical personnel, the doctors will "mistakenly" kill her. 

That is why I march for ED.

This is why we all must MARCH AGAINST ED



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Marching for Change!

10/19/2015

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by Kerry Dolan, STAR Program Manager
National Eating Disorders Association, partner to the MOM March Against ED

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On October 27th, the Mothers and Others March Against Eating Disorders will bring together a variety of voices to shed light on an issue that affects millions of Americans. It will gather people from all backgrounds and  all walks of life, whether they be family members, sufferers or advocates, to create momentum for change by establishing connections between people who are dedicated to influencing federal policy regarding eating disorders. We at the National Eating Disorders Association are passionate about these goals and are thrilled to be participating in the march.

Eating disorders have been largely ignored for far too long. We are marching to change that. We march to be heard. 

The stigma surrounding eating disorders distracts from recognizing how often they occur and how dire their consequences can be.  The march is an incredible opportunity to strengthen our community and use the power of our voices to bring about change. By uniting those affected in Washington, DC, the march is sending a clear message to people across the nation – you are not alone in this struggle against eating disorders. NEDA is honored to be part of this rally where the eating disorders  community will share experiences, take pride in victories, commemorate those who have lost their lives to the illness, and move forward in the fight to prevent, treat, and end eating disorders once and for all.  NEDA is also proud to support the Anna Westin Act and we are excited to see the progress this bill makes!

We believe that the March Against Eating Disorders will provide a platform for us all to take a stand against this disease.  We seek to spark change and fuel hope for those affected by this illness, so that they can reclaim their lives and continue to heal. Together, we will really get the ball rolling on shaping federal policy to change the way it treats this disease.  Bringing together so many people who are truly passionate about this cause is an opportunity not only to amplify our voices but also to form new, long-lasting connections as we continue our efforts.

We hope to see everyone on the National Mall for the March Against Eating Disorders. Let’s unite our voices and demand change!

Register now! www.MarchAgainstED.com




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Battling the Monster. Some are Real.

10/16/2015

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by a mother on this journey
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In January of this year, the monster too many of us have come to know by the name of ED, the monster who had secretly invaded my daughter’s life, was uncovered as my daughter was officially diagnosed with anorexia – this angered the ED monster and caused him to pull my daughter deeper into his clutches. This diagnosis came nine months after I first took her to her pediatrician with concern about her weight loss and her progressively narrowing diet. We watched her decompensate for nine months and did nothing other than weigh her and tell her to eat as she “disappeared” before our eyes.
 
I used to think that you could skate near an eating disorder and I used to think that the way she played with her food was just one of her odd habits. Unfortunately, her pediatrician knew no better. After diagnosis in January, my daughter met weekly with a therapist and a dietician and still saw her pediatrician weekly, while I desperately tried to get her to eat. For a time I even met her in the parking lot of her school every day to supervise her as she ate lunch. Neither the therapist nor the dietician were in network with our insurance policy. By the end of March, we realized that the treatment she was receiving was not enough to defeat the ED monster so in April she started in an Intensive Outpatient Program (IOP) three days a week after school until 8:15pm. As part of that program, and in addition to her group meetings, we met with a family therapist once a week and she met with the dietician once a week, a case manger/therapist at the eating disorder facility and she also continued to meet once a week with her outpatient therapist.
 
Unfortunately, the eating disorder held her captive. She continued to lose weight and the many months of partial starvation took a devastating toll on her body. She was slowly dying before our eyes.  The day I knew that she needed a higher level of care was the day I saw her running down our street after returning home from treatment to “purge” what little calories she had consumed that day.
 
Somehow my daughter managed to graduate from high school a few days after her 18th birthday. Two weeks later she was admitted to a specialized eating disorder treatment center across the country for inpatient care. Her heart rate was only in the 40s and she had orthostatic hypertension and postural tachycardia – but she still thought she was fine. That is the most awful and deadly part of the ED monster; he convinces his dying victims that there is nothing wrong with them so they will not try to silence him and ban him from their lives.
 
As hard as it was to leave my daughter in this hospital and fly back home, the first thing I felt was relief because I knew that she was being monitored. I didn’t have to fear that her heart would stop working when she was on one of her secret runs or just lying in her bed sleeping. I knew she would have to eat. The inpatient treatment program my daughter was admitted to has some of the top eating disorder specialists in the country. I was amazed by how they were able to get her to eat and gain weight. They formed a united front and sealed the gaps where the ED monster tried to penetrate. While my daughter was in inpatient/residential treatment she was also receiving therapy and learning skills necessary for her to fight for her recovery once her brain function was restored.  But the main goal of inpatient treatment is full weight restoration, because it is only after full weight restoration that the brain is nourished enough to begin healing and be cognizant enough to begin the hard work of mental recovery.
The American Psychiatric Association, the organization that creates the Diagnostic and Statistical Manual of Mental Disorders (DSM), which sets the criteria for classification of mental disorders, sets forth guidelines for psychiatrists to follow to determine the proper level of care for treatment of eating disorders. I would have thought that the insurance companies would follow the APA guidelines when doing utilization reviews (which ridiculously take place every 4 to 7 days), but they brazenly do not.
 
Can you imagine being a cancer patient and being told every few days that the insurance company is going to decide whether you need to receive treatment and they are not going to follow recommended treatment guidelines or consider your doctor’s recommendations? Or what if guidelines and your doctor dictated that you needed ten chemotherapy treatments to eradicate the cancer, but the insurance company decided that eight was good enough? Basically, that is what happened to my daughter. After four weeks of inpatient/residential care, my daughter’s psychiatrist believed that she continued to meet the APA guidelines for 24/7 care and that she needed such care. However, our insurance company (Humana), based on their own “internal guidelines” and without consideration of the APA guidelines or the recommendation of my daughter’s psychiatrist, decided that she could step down to Partial Hospitalization Program (PHP) and refused to continue to authorize coverage for her inpatient/residential treatment.
 
At this point my daughter was not fully weight restored, so we decided to do something known as plussing where we kept her in the inpatient/residential program until she was fully weight restored (which was about another week) and paid the difference between the cost of PHP and the cost of residential care. Full weight restoration is essential in order to have any chance of a sustained recovery! My daughter’s treatment team wanted her to stay in residential care for an additional week after weight restoration so that they could transition her to a weight maintenance meal plan. However, we were concerned that if we paid for another week of residential care with the insurance company paying for PHP, then when our daughter actually transitioned to PHP the insurance company would not pay for all the PHP she needed. Unfortunately, that meant that during her first week of PHP she was not allowed any meal passes and any snacks she ate with me were packed for her so she did not get the full benefit and experience of PHP. Exactly two weeks from my daughter’s transition to PHP the insurance company called late in the day and informed my daughter’s treatment team that that day was her last covered day in PHP. Their decision was based solely on a time frame. They did not take into consideration that she still met the criteria for PHP. In fact, according to her psychiatrist she even met the criteria for residential care. They also did not allow any time for us to transition back across the country and reconnect with her outpatient team. They were just denying coverage!
 
In an effort to provide my daughter with the best opportunity for recovery, we decided that we were going to follow the recommendation of her treatment team and pay out of pocket to continue her treatment in PHP. Those additional twelve days were critical in getting her to a place where she is now owning her recovery and able to live independently with the help of an outpatient treatment team. The treatment team my daughter had as an inpatient was the same team she had in PHP. They understood that the work they were doing was not going to “cure” my daughter, so they trained us, her parents, to carry on the work of recovery after she was discharged. And because she was 18 years old they individualized her PHP program and taught her how to maintain her meal plan and fight for her recovery.
 
My daughter will tell you that her time in treatment was hell and she never wants to go back.  Had we allowed the insurance company to dictate her treatment, she might already be on her way back to that hell.
 
 An insurer is a fiduciary which means that they must act in good faith and with undivided loyalty to those they insure. Our insurance company did not do that. Rather, their loyalty was to their stockholders and to their bottom line. They made their utilization decisions based upon my daughter’s weight and the number of days she had received treatment rather than on her physical and mental status and the standards set forth by the APA. They made up their own rules to suit their bottom line and in so doing they jeopardized my daughter’s life. We are fortunate that we had a home equity line of credit that we could tap into to pay for the care that the insurance company refused to pay. Many do not have the funds to be able to cover the cost of necessary treatment not paid for by their insurance company. Insurance companies seem to capitalize on this and on the fact that most of us do not have the emotional energy to fight them when we have been fighting for our child’s life.
 
Now we continue with our appeals to our insurance company. In the interim, we carry the financial and emotional burden of this debt! Our attorney’s fees are likely to be higher than the amount we paid for our child’s treatment, but we will exhaust all of our appeal rights and we will sue our insurance company to require them to do their fiduciary duty in the hopes that no more of our children will have to suffer longer than they need to or die because they were denied proper treatment.



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How Does a Mental Illness that has the Highest Mortality Rate Go Unnoticed?

10/14/2015

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By Alexandria V. Adams, Mom,  daughter and sister
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What does an eating disorder look like?
How can someone not eat?

There’s a certain hush that comes over a room when the words “eating disorder”, “mental disorder” or “addiction” are spoken. Eating disorders and mental disorders alike are often met with confusion and dismay. Our culture, as outspoken as it is, has a difficult time educating the masses on the uncomfortable parts of life - on real life.

Traditional high school textbooks break down Eating Disorders into basic categories: Anorexia Nervosa - Bulimia - Binge. And then go on to describe how athletes and females are more likely to develop an eating disorder. Ironically, what could easily be covered in chapters, backed by case studies, is often conveyed in a mere section. And unfortunately, this is where the dialogue tends to stop, when in reality, early education is where the conversation should begin.  

So how does a mental illness that has the highest rate of mortality go unnoticed?
A disorder that in the U.S. alone, is more common than Alzheimer’s or breast cancer. And at what point do you come to realize what ED really means?

For most, ED doesn’t become a reality until you’ve realized that your loved one’s silent suffering is actually fueled by a roaring, ferocious, mind-eating frenzy. But even then, the severity of ED isn’t known, until you experience what mental health professionals call the five stages of grief: Denial, Anger, Bargaining, Depression, and Acceptance.

You learn what it feels like to feel helpless. You realize that you have more questions about ED than your mind can possibly fathom, let alone process. You realize that some of those patients you saw in treatment might not be there tomorrow. You realize that there has to be a solution, even if it takes numerous failed attempts to find it. And ultimately, you realize that this time-sensitive, life-threatening illness is not talked about nearly enough and you’ll do what it takes to make that change.

Years ago, I rather reluctantly embarked on those five stages of grief. To my disbelief, I learned that ED does not discriminate. The person I never imagined having an eating disorder, did - my sister, Kate. Our family celebrates and treasures moments around the table. Our grandfather, his brothers, and his own father relied on food, shrimp to be exact, to make a living. I struggled to understand how my once vivacious, free-spirited and fun-loving, sweet tooth of a baby sister could fall victim to the burden and wrath of an Eating Disorder.

How could this have happened? Should I have told her more often how beautiful, kind and smart she was? For me, she’s one of the brightest stars in the sky, a treasure and a gift. I’m her older sister, so why I can’t I fix this? I soon learned ED is much bigger than me, and way bigger than my love and admiration. This was an obstacle she’d have to overcome and a journey she’d have to be willing to endure.
She was diagnosed at age twelve when my mother’s intuition took over. Kate wasn’t able to stomach or keep down food – the pediatrician diagnosed her with “failure to thrive”, and informed my mother that she wasn’t equipped to treat eating disorders. Instead, my mother was given a handout for local nutritionists, and Kate was put on a meal plan. Kate continued to refuse to eat. Full of desperation and uncertainty, my mother walked down the street to the house of one my childhood friends; she too had been diagnosed with Anorexia. This family understood the severity of ED’s ravenous hold. Without hesitation they said, “Take her to the hospital now. She needs to be assessed.” Kate’s health continued to deteriorate. It had only been 24 to hours at this point, and at the hospital Kate began to show signs of kidney failure. After she was admitted, she was placed on a feeding tube.
 
Once Kate was stabilized, she went on to attend a twelve-week, in-patient, out-of-state treatment specializing in young ED patients. It was there, that she met Kat West and they became fast friends; they shared more than the name Katherine. Together they would attend group, crochet and laugh. Somehow eating disorder victims, although suffering, still smile. Kat was discharged early and put on outpatient status, celebrating her birthday and sending Kate text messages. Kate was anxious to come home next. As my mother was driving to the facility, she received a call - Kat had died. She called me in tears, distraught and in fear of what the impact may be on Kate’s recovery. My mother made the tough decision to tell the facility’s team to remove Kate from the program, isolate her and withhold the information on Kat’s death. It was this moment that the severity of ED really began to sink in.
 
There have been several times when I can’t fathom a young girl witnessing the harshness of a treatment facility. My inherent urge to shelter and protect her from harm has had to be relinquished to a treatment team, and I know my mother is shaken and riddled by this reality even more. After learning of Kat’s death, Kate continued to seek treatment and recovery with more purpose.


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Katherine West’s story featured on CBS News, 60 Minutes. http://www.cbsnews.com/news/mental-illness-health-care-insurance-60-minutes/

Overtime with the help of treatment, our family has learned triggers, stressors, and how to communicate, support and love someone with ED in a healthy manner. The balancing act of surviving verses thriving has been a struggle at times, yet five years, two short-term and two long-term treatment facilities later… here we are. We’ve seen the many faces of ED, we’ve learned that there is no one-size-fits-all treatment plan, and we know more today than we did yesterday. 

More importantly, Kate is alive.

We march for the children who ED is silently ravaging within, we march for those afraid to ask for help, we march for those fearful of the unknown, we march for those taking it “a day at a time”, we March for Kat - those who went unheard and whose treatment ended too soon.

We march for all, we march for you, and we march for tomorrow.





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ED - The Demon "Giver"

10/11/2015

18 Comments

 
by Ann Contrucci, M.D.
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Kind of strange to say that ED, “eating disorder”, can give anyone anything…Well I will share what anorexia, what ED, has “given” my daughter for the past 5 years. ED has given her orthostatic hypotension and tachycardia that may never go away due to her heart muscle wasting from malnutrition. ED has given her osteopenia, a loss of calcium in all the bones of her body, and sets her up for early osteoporosis.  ED has given her cognitive problems and a near psychotic state when she is at the height of her malnutrition. ED has given her kidney stones and electrolyte disturbances. It has given her gastrointestinal issues with slowed digestion and malabsorption of vital nutrients. ED has given her a delay in her puberty and reproductive maturity, potentially giving her the inability to have children. It has given her a loss of friends and a loss of any “normal” teenage experiences.  ED has given her a locked unit to sleep in instead of sleepovers at friends’ houses. ED has given her a rigid daily schedule instead of burgeoning independence. It has given her group therapy instead of group dates. It has given her a lying manipulative voice telling her she is worthless, stupid, ugly, fat.. ED has given her a vacant stare where once gorgeous deep brown eyes were. It has given her thoughts of suicide. And most of all, ED has given my daughter a life that no one in their worst nightmare would ever or could ever dream for their child.

What has ED “given” me, her mother? ED has given me a state of 24/7 grief for my child and the HELL she experiences every single day of her life. ED has given me a self- doubt that I could have done something different to prevent this or could have recognized it earlier. For God’s sake, I am a pediatrician! I fix and heal children! And never have I seen a disease this horrific. ED has given me a black hole of hopelessness and helplessness at times that I feel I will never escape. ED has given me a sense of fear and terror that nearly has paralyzed me. ED has given me sleepless nights wondering if I will get a call from the treatment facility saying she hasn’t awakened from sleep. ED has given me more tears and sadness than I thought was possible. ED has given me an anger I have never known, swallowing my whole being up at times as I think of where my precious daughter has gone.

What has ED “given” her twin brother? ED has given him a sense of loss that no 17 year old should have to experience. It has given him a loneliness of being ripped away from the one human being he has been with since the moment of conception. It has given him a sense of anger and confusion that he simply cannot put into words. It has given him a sense of guilt he cannot do anything to help her.

Look at all the “giving “ED has done.

Through this hell we have been traveling in, I have realized there is something left…and that is hope and resolve…and one more day…
          
I will continue this fight with every ounce of energy, effort, and strength that I have. I will NOT let ED win.
          
I WILL get my daughter back…she is a fighter and the bravest soul I know fighting this undisputed demon.
          
Do you hear me, ED?
 
I WILL MARCH BECAUSE YOU WILL NOT TAKE HER. YOU WILL NOT WIN. SHE WILL RETURN…

FUED!

#MarchAgainstED
with me October 27, 2015. Register NOW! www.MarchAgainstED.com


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We’d Rather Be Florists

10/8/2015

1 Comment

 
by Veronica Burr, Outreach Associate, Veritas Collaborative, sponsor of the MOM March Against ED
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I once overheard Chase Bannister (Veritas Collaborative
Co-Founder, Senior Vice President, and Chief Strategy & Clinical Integrity Officer) tell someone he would rather be a florist. If, collectively, we discovered a cure, if somehow, someway, eating disorders received a final knockout punch and exited the ring, he would become a florist. Chase could spend his days blissfully arranging beautiful bouquets, and we would all be delighted to join him. But until that day, collectively, we march in the fight against eating disorders.
 
We march for the college student whose mind is consumed by how he will avoid offers to share a meal, instead of creating memories and fostering budding friendships.
 
We march for the ten year old who spent her summer in treatment instead of at camp.
 
We march for the athlete who thinks they need to be thinner to win.
 
We march for the parent who has struggled with an eating disorder and prays every night their child will not endure the same fate.
 
We march for anyone who has ever felt unworthy of food or ashamed after standing on a scale.
 
We march for the friends and siblings who have watched a childhood playmate transform and withdraw into a person they do not recognize – and feel powerless to help.
 
We march to raise the veil of eating disorders like to hide behind.
 
We march for the parent who drives 10 hours each way, every weekend, to visit their child in treatment.
 
We march for every patient whose access to treatment has been hindered by cost.
 
We march to continue the conversation. Why is the most fatal mental illness the most ignored?
 
We march for the mothers, fathers, sisters, brothers, aunts, uncles, grandparents and friends who have lost a loved one battling an eating disorder.
 
We march for our, and your, unborn children who we hope will live in a world where eating disorders do not exist.
 
But until eating disorders are eradicated, we will march.
 
We will march until our united voices are heard.
 
So maybe, one day, we can all be florists.

Register NOW! www.MarchAgainstED.com
 
Veronica Burr
Outreach Associate
Veritas Collaborative


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Katie’s Story

10/1/2015

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by Ellen Kitson Bennett of KMB for Answers, partner to the MOM March
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Katie was diagnosed with anorexia at age 11 and was hospitalized for almost 4 weeks; it took 3 years for her to be stabilized and returned to full activity. A strong recovery was evident for the next 8 years; she graduated from Livonia HS and attended Syracuse University, graduated with honors and received a full scholarship for Graduate School at SU. In December of 2010, I noticed some old behaviors and weight loss; I was instantly concerned. My worst fears became a reality; ED was back with a vengeance and was not going to back down. Anorexia is an insidious, brain based disease, with life threatening consequences and a 20% mortality rate, the highest of all mental illnesses. A doctor who consulted on Katie’s case in Denver told me later her brain was “hijacked” by the disease; this term helped me begin to understand why this disease is so devastating. He also used the phase, “it was like dealing with a terrorist, extreme, irrational and so incomprehensible”. Eating Disorders are not a choice, they are life threatening diseases.

We are all searching to find answers.

The purpose of this foundation is to expand awareness, knowledge, understanding, support, and options for women who struggle with anorexia. This is a devastating disorder that shatters the individual’s life. Some will struggle for years, others will lose their battle; leaving loved ones to wonder "why."

So, on Tuesday, October 27 I will March for my daughter, Katie, and for all those that struggle. Join me.

Register NOW! www.MarchAgainstED.com




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