How I Became a Rare Disease Warrior


It’s been one year since my rare disease diagnosis. The most common misconception is that I’m feeling better. People assume by now I’ve found an effective treatment.

The truth is the medical community is just learning about my diagnosis, let alone treatment. In fact, until last month, my medical chart did not include my disease’s diagnostic code, because it didn’t exist. The World Health Organization’s medical classification list didn’t include my disease until October 2016, leaving some doctors to question if the disease exists at all.

My body is still a scientific experiment. Every few months, I try a new medication. Usually, my body rejects it and I feel worse than before, but I keep trying in hopes of discovering one that works. As my specialist says, “It’s a marathon, not a sprint.”

No, my body is not better, but I am more resourceful. I personally think I deserve an honorary medical degree for the countless hours I have spent learning about biochemistry and reading research papers. Rare disease has forced me to problem solve alongside my doctors.

Despite what people want to hear, every day this year has been challenging. It is overwhelming to think of the challenges I will face. But when I reflect on my resilience over the past year, I am amazed.

I am rare and I am a warrior. One moment at a time.

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