Monica (daughter) was diagnosed with Wilson’s Disease at the age of 18, like many others it was a late diagnosis and many complications could have been avoided if there was more awareness to the condition and she was diagnosed earlier.
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 was diagnosed with Wilson’s disease in my junior year in high school. It was an early diagnosis, and my disease was caught and treated before severe symptoms started occurring.
This experience of getting diagnosed led to my career interest of biomedical engineering, which I just graduated with my masters degree in at Johns Hopkins. In my time at Hopkins, I worked for a season in Dr. Lutsenko’s (Scientific Advisor to the Wilson’s Disease Association) lab, and am very excited for the potential of their groundbreaking research in copper metabolism.
I know that the reason my disease was caught and treated early was because of the crucial network of doctors and researchers spanning Texas, Michigan, and Baltimore that I came into contact with, and I am Walking on Wilson’s with the WDA to support and share this life-saving network for the benefit of many other future patients
In 2014 my son was referred to a geneticist who thought for sure Wilson’s Disease was a match for his symptoms. I of course was like “What disease?” And immediately went home to Google it and research as much about this disease I had never heard of before.
What I found, much like any medical internet search was NOT good, it was NOT reassuring, I was downright scared to death for my sons’ future. Yet we had to sit and wait for I don’t remember how long it actually was to get the test results back, but it felt like an eternity. It definitely was not fast in any event. I thought why aren’t they doing a faster test? Oh well that would be biopsying the liver, that’s not an easy test. So we waited & we waited & we waited some more. Eventually we got the news he was negative and we could breathe again, but realized there are too many who don’t get the great news we got.
My husband and I vowed to help raise awareness of this disease, but we weren’t sure where to start, so when the Big Wow came across my path it was an easy decision to jump on board and host this event in our city.
People are suffering with this and many even going around undiagnosed because it’s so un-publicized that even most of my son’s physicians had never even heard of it. I found this was often the case via a Wilson’s Disease support group which I had joined while waiting for results, doctors just don’t know about it. So it is our mission to bring awareness to this disease and raise funds for the research to find a cure, get it diagnosed early or at the very least find new medications to help patients along in their journey with this disease and to help their families in understanding and providing the support on a personal level.
This website is not intended to provide advice on personal medical matters or to substitute for consultation with a physician. The WDA does not accept advertising for this website.
1732 First Avenue #20043. New York, NY. 10128 | 866-961-0533 or 414-961-0533