Hi! My name is Madelyn and I am a 23 year old with type 1 Gaucher disease. I got diagnosed when I was 5 years old and started receiving treatment soon after. I was extremely lucky to be diagnosed at such a young age and have access to medication as soon as I needed it in order to reverse my symptoms. Growing up with Gaucher disease definitely made me feel different from my friends, but I was truly blessed with the support system of the people around me. My family made the most of every doctor’s appointment, every infusion, and every blood test. I made connections within the Gaucher community, and even planned a 5k walk with my mom that raised thousands of dollars for new research and medicine.
I’m so excited to be a part of the Gaucher Community Alliance team as the Social Media and Development Associate. I’m honored to be able to share my story, meet new faces and continue to spread awareness about all types of Gaucher disease.
