Sunday, February 22, 2015

USA: #IHadNoIdea One Did Not Need to WANT Help to BE Helped

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. 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!
Our family in May 2013: It was a true celebration on many fronts--including the celebration of recovery for little sis and the joy of every one of us truly enjoying the cake. Because our family was never assumed to be the cause of Kinsey's anorexia, she was able to access the love and support of her parents and brothers and sister throughout her journey. 

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. Kinsey, the patient, disagreed and in fact never realized she was sick until she was well on her way to not being sick.

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 (18-months of independent recovery away at University and studying abroad currently) and she and we are the lucky ones—we’ve had access to treatment that is evidence-based and that we could afford.

Our story is atypical; I’ve spoken to few people 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).

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

* For more information on the importance of early diagnosis and treatment, please check out this article, "Anorexia Nervosa: New research underlines importance of getting help before chronicity sets in.

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