Being diagnosed with any type of chronic illness can turn your entire world upside down and is scary. When I was diagnosed with Crohn’s in 2009 my first semester of college I had no idea what was about to happen to my life. I was trying to adjust to the stress of college and then being hospitalized my first semester and my life seemed to change so rapidly where I was in and out of the doctor, spending a day in an infusion clinic every 6 weeks while trying to be a normal kid. Eventually I decided I would not let my disease define me and I wanted to somehow use my struggles to help others which is how my advocacy career began. I started a facebook page “Support Crohn’s Disease and Ulcerative Colitis” which has grown to over 25,000 members, I have spoken at events all over the country and worked on advisory boards to help change the landscape for the better for chronic illness patients. This hasn’t been an easy journey as I had to take a year off of school to have my hips replaced at age 20 and again at age 24. I was diagnosed with an extremely rare genetic disease called Hypophosphastasia that has done some serious damage to my health as we did not know I had this disease until I was 25, but I am so proud of what has come of my work and what the future holds.
I finished college and earned a Bachelor of Science in Biology Medical Sciences and also received a Master of Science in Biological Sciences and intend on getting my PhD. I am married to the love of my life and we have a one year old named Jude. My health overall is not great but I put a lot of effort into being a better person and living in spite of my illness. My goal is to use my background in science and my experiences as a patient to help other patients by educating them and providing support while also making my voice heard so that chronic illness patients always have a seat at the table and their voices heard.
