I’m Elaine. This Is My Story.
I was born in England in 1963, the youngest of five children. From a very young age I experienced abdominal pain, had an enlarged spleen, excessive bruising and frequent nose …
I’m Ted. This Is My Story.
I turned 58 last week, with Gaucher, and for me that is a pretty big deal. When I was diagnosed I was five years old. I only knew two other …
I’m Tamara. This Is My Story.
My name is Tamara Isaacs Ciocci and I have type 1 Gauchers Disease. It took 21 years to diagnose, 27 years to get enzyme replacement and 34 years to get …
Feature: Illustration by M. Rooney, “Emma’s Garden: Growing with Gaucher” Digital Story
Emma’s Garden: Growing with Gaucheris one family’s global journey with Gaucher disease. The 10 minute digital story was launched by the National Gaucher Foundation of Canada, in 2013, at the …
I’m Brittany. This Is My Story.
My name is Brittany, I’m 24 and I have Type 1 Gaucher’s Disease. All my life I’ve been tired. Very tired. As a child I played every sport you could …
Feature: Little Miss Hannah. This Is Her Story.
Our Little Miss Hannah was born on July 25, 2008. She was 6 pounds 11 ounces and 19 inches long and looked perfect in every way. Two days after birth, …
I’m Karen. This Is My Story.
My name is Karen and I have type 1 Gaucher disease. I am 57 years old and of Jewish Ashkenazik decent. I’ve lived in West Orange, NJ for 18 years. …
I’m Robin. This Is My Story.
My name is Robin and I have type 1 Gaucher’s Disease. I have lived with this my entire life. However, I only found out that I have it nearly two years …
I’m Annemarie. This Is My Story.
I was diagnosed when I was about 5 years old (1986?). My doctor at the time felt my enlarged liver and spleen, and sent in a sample of my blood …
I’m Adrianna. This Is My Story.
As a kid I dealt with bone pain and was always told it was due to growing pains. As a very young child I had unexplained nosebleeds but those went …