My name is Lauren Edwards and I was diagnosed with Type 1 Gaucher Disease when I was 18 years old. This information came as a shock to me because I was just about to start my freshman year as a volleyball player at Fairleigh Dickinson University in Madison, NJ.
What first led me to my diagnosis was getting a required blood test prior to starting Accutane, an oral medication for acne. When my results arrived, I discovered that my iron levels were extremely low and that I was anemic; I was then encouraged to see a hematologist. A year later, I returned to my hematologist, hoping to find that with her suggested treatment, my iron levels had gone up. Unfortunately, they stayed the same and at that point I knew something was wrong. After several unsuccessful blood tests, I underwent a bone marrow biopsy, which revealed that I had Type 1 Gaucher Disease.
I remember crying when my doctor told me the news. I had a rare hereditary disease that was not curable and would have to have enzyme replacement therapy infusions every two weeks for the rest of my life. He said that I could still play volleyball but I would have physical restrictions until my blood counts were normal.
Despite my unique medical situation, I tried my best to live life as a regular college student. Yes, I would miss some early morning practices or be a little late to class because of my infusion schedule, but other than that I was pretty successful. Those close to me knew about my blood disorder, but I never shared it with those outside of my family and friends…until now.
I went through four years of college being a full-time student-athlete and making time for infusions. Finally, in 2015, while in graduate school,
I started taking Cerdelga (an oral medication for Type 1 Gaucher patients) and thankfully my blood counts have remained normal ever since.
I hope that my story inspires those who have Gaucher or any other type of rare disease, that you can still live your life with an illness. With the support of my family, friends and fantastic doctors and nurses, living with this rare disease hasn’t been so bad.