Finding Me Through This Rare Journey
February 15, 2023
Patient or Advocate: Brittany Anderson
Disease Affiliation: Fibrous Dysplasia, McCune Albright Syndrome, Panhypopituitarism, Adrenal Insufficiency, Trigeminal Neuralgia, GHD
My rare journey started at age 13, and I am now 38 years old. I have 6 rare diseases that consume my daily life and always will. I have had 13 surgeries so far. They are Fibrous Dysplasia, McCune Albright Syndrome, Adrenal Insufficiency, Panhypopituitarism & GHD. At a very young age my days started to be consumed of pain 24/7. It took a long time for me to accept my reality. Not only would my life consist of surgeries and endless pain, but also would consist of hope. I spent many years mad at the world for how much I have to suffer but I don’t see it like that anymore. I had to teach myself that the face deformity from my bone disease makes me unique and rare and to love those pieces of myself. Once I did so, I was able to find my passion. So far my pain has helped push me to become a legislative advocate and I’ve never been more proud of myself. I spend my days looking for ways I can be heard to help fight for the needed changes for all of us rare disease patients.
Sign up for updates straight to your inbox.