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We hosted the big Wow in 2015 and 2016 because our youngest son, Alex, was diagnosed in 2010 at the age of 21. Once he was a very active kid and was in Community College at the time, working to transfer to NC State for a degree in Forensics. Alex was diagnosed with Wilson's Disease in July 2010 after several months of neurological decline. In the fall of 2009, he began having issues with speech, drooling and coughing while swallowing that gradually worsened. He had issues with walking and balance and when we looked back, realized the hand tremors we saw over a year ago were probably earlier symptoms.

After a visit to our family doctor, she sent told me that he had a very abnormal neurological exam with cog-wheel rigidity and sent him to Duke Neurology. He had a CT scan which showed basal ganglia infarcts or stroke-like damage. However, it was bilateral, which is not like a stroke. Plus it continued to worsen. The MRI confirmed the damage and the radiologist suggested Wilson's Disease. After much web-surfing, we both had come to that conclusion also and the neurologist decided to do lab testing for Wilson's disease.

All of his lab results confirmed it with a Ceruloplasmin level of 3 (normal is 20-60) and his copper in the blood is paradoxically low since the copper is retained in his tissues and organs like brain and liver.

Alex began de-coppering treatment with Trientine 500 mg, three times a day in August 2010.

He initially declined with treatment and then stabilized, even walking again after spending 8 weeks at Wake Med Rehab. But then he declined even worse possibly due to extremely high levels of urinary copper being released too quickly. We drove 12 hours one night and admitted him to University of Michigan Hospitals Emergency Department and he was admitted to the GI service. Dr. Askari changed his medication to Zinc and he has improved slightly.

Unfortunately the treatment was too late and Alex requires fulltime care for all of his activities of daily living. With constant therapy, he is beginning to walk with the aid of a walker and an assistant and can eat some soft foods. He is happy and we try to include him in many family outings and events.

Our hope is to raise awareness leading to earlier diagnosis and better medications for safer treatments so that others will not suffer the devastating liver and/or neurological effects of this awful disease.

We hope that the video demonstrates to people, not familiar with this disease, how devastating it is. Alex and I are on the right side in the video.

 

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Hello! As most of my friends and family are well aware, I was diagnosed with Wilson’s Disease in November 1997, when I was 17 years old and a senior in high school. At that time, I was in acute liver failure, suffering horrible pain and fatigue, and in desperate need of a liver transplant. Due to the rareness of WD, it took several months to get a diagnosis, during which time my health rapidly declined. After innumerable tests attempting to determine the cause of my condition, my mother asked my hepatologist if we could test for Kaiser-Fleischer rings (copper rings in the eye, which are a characteristic of WD), and 5 minutes later, I was sitting in the opthamologist’s office with a diagnosis!
 
 WD is a genetic abnormality that, in my case, does not allow my body to excrete copper from the foods that I eat, resulting in accumulation of a toxic level in my liver. I have had EXCELLENT medical care over the past 18 years, and I have been on strong chelators that have successfully sucked all the excess copper from my liver (and now, with daily medical compliance, I can keep my copper levels nice and low). My road to health was pretty rocky for a few years, with hospitalizations and other secondary issues cropping up due to my cirrhosis, but I am healthy now! I don’t believe that in 1997 anyone would have believed that I would live long enough to get married (8 years now to my awesome Bobby!) or have children (Boom! Two of them, ages 6 and 5!), but by the grace of God, I am alive and thriving.
 
 Neither of my parents, my brother, nor my children have tested positive for WD, which makes me the first, and currently, only, person in my family with the disease, Praise God. I feel absolutely compelled to walk in the Big Wow 2016 in order to raise awareness for, and fund additional research for, this extremely rare, often fatal or extraordinarily debilitating, disease. If you watch the WOW video, you will see immediately that I am one of the lucky ones. Please walk with me to support continued research. Thank you!
 
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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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