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Young woman misdiagnosed with anorexia actually had a rare syndrome

By Maddison Leach|

When Sara Cohen was diagnosed with anorexia in 2013 she knew something wasn't right.

The Pennsylvania teen had recently started experiencing severe pain during and after eating, resulting in a sudden and dramatic weight loss as she struggled to eat anything at all. But other than her tiny frame, there was nothing else to indicate she had an eating disorder.

"I went from being my dadกฏs sous-chef, looking forward to the weekends when we could spend the day in the kitchen trying new recipes, to crying in pain after eating just a few bites of food,กฑ she wrote in a post to Love What Matters.

"Over the next several months, the unexplained pain, fatigue, and weight loss continued until I became medically unstable and was admitted to one of the nationกฏs top childrenกฏs hospitals."

Cohen went through a series of tests and checks, but none of them provided any answers or even clues as to why she was experiencing such strange and severe symptoms. Eventually the doctors treating her decided that there was "nothing physically wrong" with her จC despite the crippling pain she was experiencing จC and put her aversion down to an eating disorder.

"With tears welling up in my eyes, I was only able to mutter one question: กฎBut why does it hurt so much when I eat?กฏ Nobody answered me," Cohen explained.

For three years she was told it was "all in her head". Yet Cohen was still unable to eat due to the excruciating pain it caused and had to have a feeding tube surgically implanted in her stomach to sustain her. This wasn't anorexia, and it wasn't just in her head.

"So, what do you do when the people who are supposed to make you feel better only make you feel worse?"

In December of 2016 she and her parents decided they needed to seek help elsewhere, namely with Dr Abdallah in Herndon, Virginia. Rather than accepting the previous eating disorder diagnosis, Dr Abdallah worked through Cohen's symptoms with her and developed a plan to figure out what was really wrong with her.

It was a long road, with months of tests and treatments, but in the summer of 2017 Dr Abdullah finally discovered something.

"He looked up from the computer and just says, กฎthis is bigกชwe found it. You have something called Median Arcuate Ligament Syndrome, itกฏs very rare, but we can treat it with surgery and I know an excellent surgeon who will take care of you,'" Cohen recalled.

"With tears welling up in my eyes once again, I asked, กฎIs this is why it hurts so much when I eat?กฏ"

"He looked at me, smiled, and answered, กฎyes it is.กฏ"

Median Arcuate Ligament Syndrome (MALS) is also known as Celiac Artery Compression Syndrome or Dunbar Syndrome, and is an anatomical anomaly wherein the diaphragm sits too low, lowering the median arcuate ligament onto the celiac artery and surrounding nerves. This compresses them, causing the nerves to get inflamed and resulting in symptoms like the severe upper-abdominal pain (particularly after eating) and significant weight loss Cohen experiences.

Being diagnosed with MALS after years of terrible pain was the breakthrough moment she had been praying for, and after two surgeries to help correct the condition she's finally getting a new lease on life. And it only took 342 doctor's appointments to get there.

Cohen still isn't able to eat all her food without pain, and still struggles with other symptoms, but her diagnosis and surgery means she actually knows what she's dealing with and how to manage it. Now she's connecting with other sufferers of rare medical conditions to share her experience, and hopes that she can help raise awareness of MALS.

"Rare can bring us together," she concluded, "Today, I appreciate all I have learned on this journey and all who are travelling with me, because as long as weกฏre in this together, we will get each other through it!กฑ

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