A Patient Engagement Professional, Now Wearing the Hat of a Patient Vivian Larsen March 19, 2024

A Patient Engagement Professional, Now Wearing the Hat of a Patient

Insights

On this first day of spring, I’m visualizing imageries of renewal and reawakening. Just like the phoenix rising from the ashes, I am being reborn – refreshed and ready to change the world.

Today marks Day 23 of my month-long hospital stay for my chemotherapy treatment. I was diagnosed with Acute Myeloid Leukemia on February 16th. It’s still surreal to think of myself as a cancer patient because I have no outward signs of being sick. Through a routine blood test in January to check my A1c levels, I found out I was severely anemic. Now I’m thrust into being a part of patient community that I’m realizing needs help to overcome health inequities. As a patient engagement professional, now wearing the hat of a patient, I feel compelled even more to help change the narrative. 

According to NMDP, the odds of Asians like me finding a bone marrow donor match is 47%. It’s even lower at 29% for Black and African Americans. What keeps me up at night while I’m receiving stellar care at Fox Chase Cancer Center in Philadelphia is the fear that if the chemotherapy doesn’t work, I will not have a fully matched bone marrow donor.
Statistics of likelihood of finding a matching donor by ethnicity
What will help improve the statistics for blood cancer patients is a simple saliva swab to test for matches and the commitment to donate your stem cells if you’re called upon. A common misconception is that the only way to donate blood stem cells is through a surgical procedure. About 90% of the time, the process is similar to donating platelets which involves no surgery at all! Donating blood and platelets are also tangible ways to save lives.
 

I’m at the beginning of my cancer journey. I am also realizing how incredibly lucky I am to have a strong support network, ready to move mountains to help. My bestie, Ting Shih, has lovingly assembled “Team Vivian”. I don’t feel alone in this journey because of the countless number of people who have cheered me on and given me strength everyday. My amazing colleagues at Legacy Health Strategies are uniquely poised to make sure people of color have access to healthcare and are represented in clinical research. I have every chance to beat my leukemia. And for that, I am truly grateful.

Originally published on LinkedIn by Vivian Larsen on March 19, 2024