I am an advocate of chronic and invisible illness, as well as rare disease. Through my own journey battling different rare diseases, I realized there was a void of community support and a place where patients could go to talk to others in similar situations and share their stories. I felt helpless and began to do my own research day in and day out, self advocating until I got the treatment and answers I deserved. I knew that I couldn't be the only person going through this and with my background in Association & Events Management I decided to create EmPOWERThePATIENTS Foundation. While it was a little uncomfortable telling my story to the world, I knew I could save so many lives and if I could even help just one person, it was worth it. The overwhelming response was something I could have never imagined. I spend all of my free time responding to messages just so people know they are not alone, because that's how I felt. There is so much negativity in the world today, especially online and bullying because people are "different", but I like being different and I want people to know it's OK to be different and Rare. Additionally, our Foundation is huge on patient education. There are so many things people do not know that are so easy to help empower them - For example most people wait weeks to get their blood labs back until their next doctor appointment, but we teach them they can actually call Quest or LabCorp the next day and have them emailed directly to their personal inbox. Why wait and stress when you are already feeling bad? If something is flagged or marked off you can call your doctor then and get treatment or adjust your meds sooner. Or Gluten! I am allergic to gluten and have Celiac Disease, and I recently learned it is a filler in several medications including antibiotics. Knowledge is Power and Positivity is Key. After my thyroidectomy this became my motto. EmPOWERThePATIENTS helps Empower patients to take control of their own health and lives.
Boca Raton, FL
She’s absolutely amazing and has helped me through so many things. She’s basically a big sister to me and always welcomed me and has helped me understand so many more things relating to chronic illness. I love her so much and she deserves this! — Tiffany
Wonderful patient advocate example — Rebecca
I’m a Patient Leader