There are certain moments in life that are forever etched in your memory. The moment my son, Justin, was diagnosed with Wilson’s Disease is one such moment. Another related but much happier moment was when Justin met another Wilson’s Disease patient for the first time since being diagnosed 8 years ago. At the Big Wow event in Loomis, CA, Justin met a kindred spirit in fellow patient Zach. The boys had never met before but were instantly connected by the experiences they shared together as teens living and thriving with Wilson’s Disease.

My hope for the Big Wow is that it will allow other patients the opportunity to connect with one another and know they are not alone.

I had a life changing diagnosis of Wilson’s disease at the age of 24. I received my official Wilsons Disease diagnosis November 3rd, 2016. It honestly took me a few months to grasp what I had just been diagnosed with; I felt relieved that I finally had an answer as to what was causing my symptoms. If it wasn’t for my optometrist, I am not sure I would have ever been diagnosed. He noticed color differences in my eyes that were not normal. My symptoms were severe. I was too scared to go to the doctor as I was struggling to walk, talk and swallow.

I have two adult children that have Wilson’s disease. At the time they were diagnosed they were 14 and 17. That was 14 years ago. We had changed from a pediatrician to an internist. They both had lab work after their initial visits for sports physicals. They both had elevated liver enzymes. The doctor called them back for more lab tests and within 10 days called to tell me he was quite certain they had Wilson’s disease. Things became challenging after that because of their ages and misinformation. We ended up seeing Dr. Askari at University Of Michigan, and getting the correct information. They are very fortunate to be healthy today.

We have been to a couple Wilson’s conferences and understand that not all people with Wilson’s are so fortunate. This is the main reason I volunteered to organize a walk in the Chicago area.

Hi, my name is Amanda Gross and I was diagnosed with Wilson’s Disease at age 19. I was incredibly lucky that a routine blood test revealing elevated liver enzymes sent me on a path to a quick diagnosis. Today, I am asymptomatic and treated with Galzin maintenance therapy.