Rare or Rarely Diagnosed

By Elizabeth Matyus

I couldn’t eat, not that I wouldn’t or didn’t want to, but I physically wasn’t able
to. I woke up one morning in July after my freshman year of college, unable to eat or drink a
sip of water without extreme pain and vomiting. I was a relatively healthy 19-year-old
college student, but in a short time, I became violently ill. I was attending classes, cheer practice, and other obligations full-time until I suddenly wasn’t. Up until this point, I had been dismissed by several doctors, surgeons, and care

The question remained- why? When I was in high school, I had an eating disorder
that required intensive treatment and therefore was placed on my medical record. It was
the first thing brought up as I cried in pain during each flare, each bite of food, and each
sip of water. It didn’t take long to realize that my mental health history impacts how
medical providers view me going forward. I was struggling just to survive with no
answer to the cause of my extreme pain and decline in health. Yet, my personal history
was being used against me.

After all the misdiagnoses, traumatic medical procedures, and lack of
communication between my doctors, I traveled to one of the top hospitals in the country.
I underwent repeat CT scans, mesenteric ultrasounds, and nerve blocks that were finally
conclusive for a diagnosis that had previously been ignored and dismissed. I was
diagnosed with MALS (median arcuate ligament syndrome), a rare abdominal vascular
compression syndrome. At that point, blood was severely constricted and unable to flow
through my celiac artery to get to my abdominal organs. My mental health history played
a role in the lack of care I received and sadly could be the narrative for others with the same history. The exact origin of MALS is unknown and still being explored by researchers in the field. There are thought to be congenital factors or problems occurring during growth that make these issues more apparent later. Unfortunately, my only viable
treatment option was surgery, to trim the ligament and remove the damaged nerves
caused by the compression in my artery. While it seemed like I was suddenly cured and
healthy, my fight was far from over. As soon as I made it over one hurdle, another one
was always in front of me. Everything that happened since the day I lost my ability to eat
was a significant piece of my puzzle and a view into the much larger issue we are facing
in healthcare.

Not only is there a stigma around mental health, but there is an unwillingness to
treat the improbable. I’m not the first and unfortunately, I won’t be the last. According to
the U.S. Department of Veterans Affairs, 12 million people receive a misdiagnosis yearly
in America (Singh, 2014). Something must change. Rare diseases do exist. In an evolving
world where discoveries happen every day, doctors seem to be lagging in recognizing and
treating conditions that are otherwise undetectable to the untrained individual.
Accountability and continuous education in the pursuit of healthcare should be at the
forefront of every medical team’s mind. It’s likely everyone knows at least someone with
a rare illness.

MALS was my battle and could very well be your family member or friend’s
battle as well. The exact number of MALS cases is unknown (NORD, 2020), but The
MALS Foundation is a nonprofit specifically working on raising awareness among
clinicians and the public so that a diagnosis doesn’t have to take years (National MALS
Foundation). You can help by watching the seven-minute short but important educational video on The MALS Foundation website (also linked below). By learning and educating ourselves, we can hopefully stop the problem before it gets too far.



National Mals Foundation: Non-Profit Organization. MALS Foundation. (n.d.). Retrieved
September 16, 2022, from

NORD (National Organization for Rare Disorders). (2020, January 23). Retrieved September 16,
2022, from

Singh, H. (2014, July.). Twelve million patients are misdiagnosed yearly in America, says a VA
researcher. Research Currents. Retrieved October 14, 2022, from currents/summer2014 /summer2014-8.cfm

Categories: Lifestyle, Mental health, op ed

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