To me, Halloween is one of the most quintessentially American holidays. I grew up in a Spanish household where Halloween wasn’t celebrated, but my parents made sure I could still take part in the American traditions that were an important part of my childhood. As a little girl, I would…
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When I was diagnosed with Gaucher disease at 21, I had a lot of questions about what it would mean for my future. Some were medical. I wondered whether I would develop complications or whether having a genetic disease would make certain things more complicated than I had expected.
October is objectively the best month of the year. Take my words with a grain of salt, of course, because October is also my favorite month. I love the reset, the changing of the leaves, and the pumpkin-flavored food, but above all, I love that my birthday is in October.
Having Gaucher disease has made me think about my health in ways I probably wouldn’t have otherwise. I pay attention to my blood work, keep up with my doctor appointments, and receive regular enzyme replacement therapy. I also think about things like nutrition, exercise, and what I can…
There are many things I never imagined I would become good at because of Gaucher disease. Reading blood work? Sure. Navigating my house while attached to an IV pole? Weirdly, yes. Making a cappuccino while receiving an infusion? Apparently, also yes. Recently, I found myself standing in the kitchen…
For me, growing up with Gaucher disease involved a dichotomy of sorts. I did all the “normal” things kids do, but at the same time, my parents and doctors would tell me to be careful and remind me that I was disabled. I never had the privilege of experiencing…
For the first 28 years of my life, I played the part of an athlete, a straight-A student, and a fun, witty, and cute girl who thrived on being social. I knew how to blend in, run with the crowd, and make friends with ease. I never felt invisible. But…
I’m currently navigating a plethora of health challenges, including Gaucher disease and a recent diagnosis of antiphospholipid antibody syndrome, all while raising an almost-2-year-old. So you might think my family and I were crazy for recently traveling across the world to the United States. And, honestly, maybe we…
Every time I go to the doctor with an injury, I’m asked the same question: “On a scale of 1 to 10, how much does it hurt?” I’ve always found this interesting, because how does someone quantify pain? I have always had an extremely high pain tolerance as someone…
When I was younger, I knew what an implanted port was, but my understanding of it was limited. Then, in 2010, I received a phone call that would change my life. I was told that I had been diagnosed with a rare genetic disorder called Gaucher disease and I’d…
Recent Posts
- Finding my own ‘happily ever after’ in a life with Gaucher disease
- While I was worried about the effects of Gaucher, life happened anyway
- 30-year Gaucher disease diagnosis delay leaves lasting bone damage
- Another year around the sun with Gaucher, and I am still here
- Recognizing the role nutrition and exercise play alongside treatment