I decided to create this blog as a platform for any and everyone who is affected by Gaucher Disease to share their stories and experiences. It is my hope that our stories, collected in one central location, will enable us to raise awareness as well as inspire, understand, support, and encourage one another.
Here’s my story:
My name is Lauren Edwards. I am 22 years old 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.
The craziest thing is that I first found out something was wrong because I wanted to try Acutane for my acne at the time. I had to get blood drawn to ensure that the oral medication would agree with my system. However, instead of the results I was looking for, I found out that my iron levels were extremely low and that I was anemic. A year later, I went to my hematologist with hopes to confirm that my iron levels had gone up. Unfortunately, they stayed the same and at that point we knew something was wrong.
After several unsuccessful blood tests, it was necessary for me to undergo a bone marrow biopsy to finally figure out what was happening. The biopsy revealed that I had Type 1 Gaucher which was shocking seeing as though it is primarily found in Jewish people.
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 broadcasted it to those who did not know…until now.
I went through four years of college being a full-time student, volleyball player and making time for infusions. Thankfully, now that I am a graduate student, it is my first year not having to schedule time for infusions. I started taking Cerdelga (the oral medication for Type 1 Gaucher patients) a few months ago and so far so good!
I hope that my story inspires those who have Gaucher or any other type of disease, that you can still live your life with an illness. With the support of my family, friends, and fantastic doctors and nurses, it really isn’t so bad.