I am 44 years old and I was diagnosed with Gaucher Disease at age 5. The doctor felt that my spleen was enlarged and as I was growing up, as a teenager, I was always very tired. I was working two jobs. I would go to my first job, come home to sleep, then go to my second job. After high school, I started working one full-time job with benefits.
I began treatment in 1999, but before that I was gaining weight. Ever since I started my treatments I feel better, and I still get Cerezyme infusions every two weeks.
I had two kids, neither of which was diagnosed with Gaucher Disease. Sadly, on July 24, 2014 I lost my daughter Meryn. She began suffering from seizures at 8 years old and passed away in her sleep at age 10. I have one son, Adam who keeps me going every day.
Even though I am still receiving bi-weekly infusions, I am struggling to lose weight and my stomach is enlarged. It seems like I am gaining weight because of depression. I struggle with dealing with the loss of my daughter every single day. I have been going to counseling which has been helping, but overall, I am just okay.
-Kristin Brunet-Hodges; Detroit, MI