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Growing up athletics was a huge part of my life. I played three varsity sports for my high school, and was a competitive swimmer during the summers. In college I focused on lacrosse and became a 4 year starter at San Diego State University. I was always used to being active, and I loved sports.Growing up athletics was a huge part of my life. I played three varsity sports for my high school, and was a competitive swimmer during the summers. In college I focused on lacrosse and became a 4 year starter at San Diego State University. I was always used to being active, and I loved sports.

At the young age of 25, everything dramatically changed for the worse. I had just landed my dream job, took a vacation to Ireland, and then it hit me hard. My hands and feet would twitch uncontrollably, my ability to write diminished, and I became overly exhausted from simple tasks. I told my parents I was going crazy and that I needed to quit my job. This was very unlike me to make such a rash decision without a backup plan, but I knew something in me felt different. My Mom immediately knew this was not right and took me to the doctor. After months of convincing them it was not anxiety, and pleading with her to run more blood work, the results were in. I was rushed to have an MRI scan of my brain immediately after test results showed extremely high levels of copper in my system. I was lucky to then be seen by doctors at University of Colorado (UCH) that had seen similar cases. I was seen by a hepatologist as well as a neurologist to try and determine my exact diagnosis. The hepatologist could see the panic on my family’s faces as he said, “You are lucky that you have a disease which is treatable, but not curable.” After hearing this news he began to explain Wilsons Disease to all of us.

The doctors put me on Syrpine and within the first few days of taking the drug, I could no longer walk, talk, swallow, or do anything on my own. As my health began to rapidly decline, my doctors tell us about a trial drug trial that I may qualify for. We flew to Los Angeles to speak to the experts at UCLA the next day. I was very lucky to qualify for, as there are only 20 patients in the world who were on this new drug. I had to fly to LA every month for a year and now every few months until the FDA hopefully approves it in the next five years. I can honestly say that the trial drug saved my life; otherwise I would have just withered away. Through many sessions of occupational, physical and speech therapy, lots of hard work and good luck, I began to regain some of my motor skills. 

I have been blessed beyond belief with great doctors, trainers, family, boyfriend, and friends. My family still wanted me to feel like a  “normal” young adult and not let Wilson Disease take over my life but instead to fight hard and beat it! They signed me up for a 5K in June 2016, less than one year after my diagnoses. My goal was to walk the first mile, with two people holding my hands, and I did! A year later I had set a new goal for myself. I was going to run the entire thing averaging 12 minute miles. I achieved my goal once again and averaged 11 minutes per mile. That is where I am at now. I still shake, have difficulty talking, and get tired very easy, but I am just staying positive! My two quotes I live by are “Embrace the power of positivity” and “Use your smile to change the world, don’t let the world change your smile.”

 

 

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Jean P. Perog
Jean P. Perog President
Jean is a retired CPA living in Merritt, British Columbia. She has WD and has a brother with WD. Jean also served as Treasurer of the Wilson Disease Association and is an active volunteer in her community.
Carol Terry
Carol Terry Vice President
Carol was diagnosed in 1973 with WD and is a retired US Government accountant. She helped found the WDA in 1983 and served as its President for ten years. She also served as Vice-President, Treasurer and Secretary.
Mary L. Graper
Mary L. Graper VP Scientific Affairs
Mary has over 25 years experience as a volunteer leader, and is recognized for her creativity, organizational and leadership skills. She holds a B.S. degree in Education from the University of Wisconsin-Milwaukee.
Jeanne A. Friedman
Jeanne A. Friedman Secretary
Jeanne is a Licensed Clinical Social Worker and has WD. She has been with Wilson Disease Association since 2013 and lives in Kew Gardens, New York.
Stephen Walsh
Stephen Walsh Treasurer
Stephen lives in Boulder, Colorado and has a daughter with WD. He went to college at the University of Colorado and graduated with a B.S. in finance.

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