Olivia Colombo: MALS Marathoner

October 13, 2021

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(Courtesy of Jen Powderly

Olivia Colombo is the true embodiment of a survivor. Known to friends and family as ‘Liv,’ she is a college student, chronic illness warrior, and soon-to-be social worker who ran the Boston Marathon in support of Boston Children’s Hospital this past week. That said, she has faced more challenges in the past year than most see in a lifetime. 

In February 2021, the second semester of her junior year, Liv’s medical team was unsure whether she’d live to graduate from college. Suffering from undiagnosed gastrointestinal issues, she was eventually diagnosed with Adult Failure to Thrive (AFTT)—a state of decline characterized by malnourishment, dehydration, poor immune function, and impaired functioning. She lived with immense pain daily. This excruciating pain led to her ultimately being rushed to the hospital after being found unresponsive.

Liv endured 12 overnight stays in the hospital throughout her junior year, some prompted by four separate trips to the ER. Amid this chaos, she reached out for support from trusted friends, family, campus ministers, and mental health professionals. She felt hopeless, knowing she could very well die from this invisible illness, as even doctors at a world-renowned hospital failed to understand what was causing her pain. 

She faced medical gaslighting from practitioners who accused her of being resistant to treatment, trying to force her into eating disorder recovery programs, and acting as though she had brought this illness on herself. Her doctors refused to consider that she may have this rare disease, leading to prolonged pain and requiring extensive self-advocacy even to reach her diagnosis. Still, she persevered. 

(Olivia and her beloved service dog Heidi/Courtesy of Jen Powderly)

In June 2021, after weeks of tireless advocacy, Liv underwent a surgical diagnostic procedure—notably, one required to undergo while conscious—and was finally diagnosed with neurogenic Median Arcuate Ligament Syndrome (MALS). This condition leads to the compression of the celiac artery and surrounding nerves, which control much of the autonomic nervous system. It causes a wide variety of symptoms, including pain compared to that of those living with end-stage pancreatic cancer.

In July 2021, Liv received robotic laparoscopic MALS surgery, which is generally considered a cure. This procedure relieved most of her symptoms, though it could not erase the ongoing medical trauma she endured. In the five years that Liv spent pursuing a diagnosis, she saw 33 doctors who either missed her MALS or didn’t consider it a real condition. 

Regardless of those doctors’ opinions, Liv knows that her MALS was real, a fact only validated by the relief she felt post-op. Patients refer to the time after MALS surgery as “Life 2.0” because it drastically changes things. Finally, Olivia could get back to doing the things she loved—including eating fun foods and running road races.

(Courtesy of Jen Powderly)

This week, just three months after MALS surgery, Liv accomplished one of her lifelong goals: running in the Boston Marathon. Even with such little time to train, she raised over $8,000 for Boston Children’s Hospital and completed the race in just over five and a half hours. Running a marathon is an incredible feat for anyone, but it was close to a miracle for Olivia. 

Liv continues to live with other chronic conditions, including Postural Orthostatic Tachycardia Syndrome (POTS), Complex Regional Pain Syndrome (CRPS), and Mast Cell Activation Syndrome (MCAS). Her quality of life has improved significantly in the past few months, but she is still proud of her identity as a disabled person. She does not aim to be inspirational but instead a complex person with a complex story.

When asked how she was feeling a day after the marathon, Liv said “I feel like I’m slowly processing the enormity of this. I feared I wouldn’t make it to senior year, let alone accomplish my goal of running Boston before I graduate. The journey was MALS was traumatic and inhumane at times, but I’m insanely lucky I finally landed with a medical team who heard me, loved me, and listened to me. I ran because of them. I hope someday all doctors are well-versed in MALS. Everyone should have a chance at Life 2.0.”

Liv is a survivor of MALS, a patient with multiple health conditions, and an incredibly compassionate human who lives a whole and beautiful life. She is truly remarkable.

You can follow Liv and learn more about her story on Instagram, @theMALSmarathoner, or on Twitter, @LivFullyAlive. You can also donate to her fundraising page here!

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