When I was 6, I thought I was a teenage mutant ninja turtle (TMNT) in training. I realize 6 years old is arguably too old to think you’re going to be a crime-fighting turtle but let me explain.
I have a rare genetic disorder called Alagille Syndrome (ALGS), which can affect all the major organ systems with varying severity. In my case, that meant poor growth, chronic itching, and reduced liver function.
At a young age, I’d seen countless doctors. During one appointment, I overheard the phrase, “due to her genetic mutation” and it clicked — I was going to be the first mini TMNT. At 6 years old, I’d only heard the word “mutation” on TMNT, so clearly, this meant my life would be spent fighting crime and eating pizza.
I couldn’t have imagined the actual fight I was in for.
Battle of a lifetime
There are no cures or treatments for the roughly 1 in 35,000 affected by ALGS worldwide. I’ve met and then lost countless fellow ALGS warriors of all ages, all due to complications stemming from the disease.
I’ve watched families mourn the losses of their children and grieve the lives their loved ones wouldn’t live. My family and I weren’t prepared for the toll this would take.
Everyone was so focused on the ALGS that no one prepared me for the common chronic conditions associated with it, such as depression and anxiety. I thought the more common the diagnosis, the more support I would find. I soon found out I was wrong.
As I began college, I was navigating life with ALGS, clinical depression, and generalized anxiety disorder. I threw myself into classes, clubs, and rare disease advocacy.
I became the youngest member of the board of directors for the organization for ALGS. I began advocating and looking for support for young adults with rare diseases and mental health struggles, which go hand-in-hand. I found nothing.
My depression convinced me I would never find a partner. Who would want to be with someone who itches all the time and has no definite life expectancy?
I was riddled with survivors’ guilt after watching countless kids with ALGS die while I was relatively healthy. I reached my lowest point when my role model in the ALGS community passed away unexpectedly. I collapsed in my dorm room in numb disbelief. I was in a dark place, drowning in grief, and losing hope.
During this, I had a full schedule of classes, a job, collegiate leadership positions, and fundraisers for ALGS research. It felt as if I had two lives: one in which I was a “normal” college student and the other that was dominated by chronic illnesses, and a life filled with pain, loss, and fear.
I spent years searching for connection, understanding, empowerment, and support in navigating both aspects of my life. Then I found Our Odyssey.
When I read the organization’s mission to provide social and emotional support for young adults impacted by rare and chronic conditions, I jumped in and haven’t looked back. I believe in this amazing team because we meet young adults where they are with support, resources, and community — whether it’s helping them navigating college, healthcare, jobs, relationships, or all of the above.
We do this by bringing young adults together through in-person and virtual meet-ups year-round at no cost to them. Our Odyssey is there to make those stressful “normal” and rare battles a little bit easier, and ensuring young adults don’t feel alone on their journey.
Thanks to Our Odyssey, I no longer feel like a lone ninja turtle fighting my way through battles. I have a new team to support, fight, and share pizza with!