In all my life, I had never felt like this before. I was always a very active, energetic person, but I started to feel exhausted all the time. I gained weight, and it seemed like nothing I did ever made the scale budge. I knew something was wrong with me but had no explanation. My liver enzymes were elevated but that seemed minor compared to the way I was feeling. The doctor I was seeing kept telling me, “Try to lose some weight and we’ll keep an eye on your liver enzymes. All we can really do for now is wait and see.”
Wait and see. That became the message I had to learn to accept, even
though I knew the symptoms I was experiencing were real.
After four challenging years without any clear answers, I had a liver
biopsy completed. Then I finally got my answer. It was a diagnosis
called MASH. I had never heard of it before, but knew I was going to
have to tackle it head-on.
Short for Metabolic dysfunction-associated steatohepatitis (MASH), MASH is a chronic condition that results from fatty liver disease that has progressed. If left unchecked, MASH can have fatal consequences, including liver failure, cancer, or a cardiovascular event.
I had finally gotten the answer I was looking for, but there were no treatments or a cure.
After my diagnosis, I became an amateur researcher. Patrolling the internet for answers, solutions and most importantly, hope. Then one day on Facebook an ad came up for a clinical trial for MASH. Knowing it was a long shot, I clicked the link. It was the only hope I had.
After many conversations and research, I made the decision to participate. The next four and a half years were life changing. For the first time, I got the support of a full care team who helped me learn more about my condition. From what to eat or what to monitor, I finally experienced what it was like to have a seat at the table of my own health journey.
The doctors of the trial taught me how to ask the right questions, to take ownership of my health, and most importantly showed me how I can live a fulfilling life with this chronic condition. Through this trial, they also helped me to seek out an endocrinologist who partnered with me to manage my Type 2 diabetes diagnosis.
After four and a half years of world class medical care the clinical trial came to end. I learned to trust my care team, and myself. Throughout my time, I lost a significant amount of weight, and felt my vitality return. Scared for the future, I was nervous about what this next chapter would look like. Then one night I was out with a girlfriend having dinner when I saw a job description pop up on my phone for an “Associate Brand Director for MASH” at Novo Nordisk.
The role focused on raising awareness about MASH and building advocacy for members of this patient community. At this point fate took hold, and after a few rigorous interviews I found myself accepting an offer for this new opportunity.
Through this role and my own experiences, I have learned what it takes to be your own health advocate. Living with a chronic condition is not easy, but with the right care team in place and asking the tough questions it’s possible to live a happy and fulfilling life.
I was not comfortable with myself in pictures because I didn’t like how I looked and felt that my illness showed through. Beyond my appearance, I felt as if the light inside me was gone, and I was losing myself. Now I no longer hide. I now stand proud knowing the opportunity I have to help my fellow patient community, and taking ownership of my condition has forever changed me. My personal journey brought hope into my life and light back into my soul.
We all have an opportunity to make a difference and teach others through our lived experience. I feel proud to know I have finally found mine.
