For four years, Sara Cohen was told by doctors she was anorexic. She wasn't.

Sara Cohen doesn’t have a favourite food in the traditional sense.

Eating food doesn’t evoke pleasant memories for her, she finds food stressful. Because Sara can’t remember the last time she ate without pain.

Instead, the 22-year-old from Pennsylvania associates food with memories. She loves Thanksgiving for example because it means her extended family and friends are all together.

Sara has something called Median Arcuate Ligament Syndrome (MALS), it’s extremely rare, and has put her in and out of hospitals for more than seven years.

MALS was represented on an October 2018 episode of Greys Anatomy. Post continues after video.

“But my symptoms have been present for as long as I can remember and I noticed I was different to my peers in middle school because I had to work harder to keep up,” she told Mamamia.

Her diaphragm sits too low, pressing into her arteries and nerves making them inflamed. It makes eating excruciating.

Her disease is so rare, Sara sat through 342 doctor’s appointments being told she had anorexia, when she didn’t.

It was decided nothing was ‘physically wrong’ with her despite the unexplained crippling pain, fatigue, and extreme weight loss. She was diagnosed with an eating disorder and told it was all in her head.

“Then why does it hurt so much when I eat,” Sara recalled herself saying through tears, in an article she wrote for Love What Matters.

“I was ignored, mistreated and labelled ‘non compliant’ something I have come to call the most deadly word in medicine,” she told Mamamia.

“They got in my head, and tried to replace my reality with their own.

“That incorrect label they gave me was essentially a death sentence, but I didn’t know that until I saw it from their side,” she added.

Three years later her symptoms were in rapid decline, and so her family sought yet another opinion.

It was Dr Abdallah in Herndon, Virginia that changed Sara’s life in August 2017. After dozens and dozens of tests he was able to find a diagnosis – MALS. He also declared it was treatable with surgery.

“It took 342 clinic appointments, 12 ultrasounds, 33 scans, 2 nerve biopsies, 3 outpatient procedures, 119 IV blood raws, 12 emergency room visits, 2 surgeries and 45 days in the hospital to find a doctor with the right tools to address my unique symptoms and find a treatment,” wrote Sara.

She has had both laparoscopic and open surgery, but is still unable to eat enough orally to sustain herself like other post-op MALS patients.

“My surgeon has a 92% success rate, but due to my years of misdiagnosis and incorrect treatments my recovery is expected to be extremely long,” she explained.

 

View this post on Instagram

 

Life 2.0 (aka post MALS surgery with Dr. Hsu) began yesterday morning! I’m feeling pretty honored to start my new life on my grandmother’s birthday— She truly embodies everything it means to be strong and I would not have made it here without her. The surgery took almost 3 hours and Dr. Hsu said that my ligament had completely reattached and the nerves were extremely inflamed, but both are now a thing of the past! The surgery, however, was the easy part of the day. I ended up in the PACU for 7 hours instead of the typical 1-2 hours while the pain team worked to find something that I wasn’t allergic to. I only remember a few moments of yesterday but the pain doctor came to see me today and sat on the end of my bed and admitted that I really scared her and was definitely in the top ten worst reactions she has seen… she had to put me back out to stop the reactions and get the meds out of my system. I remember her coming and holding my hand for a while then the next thing I knew I was up on the ICU floor where I spent the night. I am beyond exhausted (I have fallen asleep 4 times just typing this) and still in pain, but I am happily on the road to recovery and taking it one step at a time.

A post shared by Sara (@fromthepatientperspective) on May 17, 2018 at 3:44pm PDT

“I receive my nutrition from TPN (total parenteral nutrition) which is a central line placed in one of the large veins in my chest,” Sara told Mamamia.

She is allowed to eat.. as long as it’s non-dairy, low fibre, low fat, low sugar, low histamine and egg free. But even when she follows those rules, it often comes back up.

“I have made myself a goal of eating something every day, even if it’s just one bite. It’s not easy and it still causes a lot of pain and nausea, but I am determined to make it only temporary,” Sara told Mamamia.

Sara is studying her masters in occupational therapy and when she can, works as a research assistant at her university helping them find better care for individuals with complex health and social needs.

Her health journey is far from over, and despite the positivity she embodies online, her latest Instagram post gave an insight into what life is like living with MALS.

"We often find ourselves wanting to talk or write letters to our past selves in low moments to say that everything will turn out okay, but what do we do when we find ourselves still in those low moments?" she asked her nearly 4000 followers.