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Stories of warriors touched by Wilson’s Disease and how they fought back by rallying people they know to walk with them and raise money for the patient registry.

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Details: Category: Wilson's Warriors

Karl Dyczek Warrior

Out of no where, in February 2014, I had jaundice, a lack of appetite, and swelling in my abdomen, feet, and ankles. As a result, I was admitted to the hospital right away. I had to get a blood transfusion the night I was admitted. I spent three days at the hospital and was diagnosed there with cirrhosis of the liver. I was referred to a gastroenterologist and hematologist. After getting a liver biopsy, completing the hemochromatosis (I'm a carrier) and Wilson's Disease genetic mutation blood tests, and 24 hour urine test I was diagnosed in April 2014 with WD.

Although I have cirrhosis, I was not in need of a liver transplant like other WD patients. My liver function lab work is now in normal range. A brain MRI reflected no copper deposits in my brain.

As of last year, I have a little amount of copper in one of my eyes. I am blessed and grateful to be doing much better nowadays.

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Details: Category: Wilson's Warriors

My nephew has Wilson’s Disease. We attended the Big Wow in Ann Arbor in 2015, and really felt it was a good cause.

This year, (2016) the Big Wow falls on my daughter’s wedding day. The family decided that we could do both, if the walk was closer. So, we decided to organize a walk at a time and location that allows us to participate in both events. I guess you could say it was selfish.

We hope that having a walk in another city will help spread the word and awareness of Wilson’s Disease.

Editor’s note: This editor would call hosting a walk on your daughter’s wedding day as courageous and generous and on behalf of the Wilson’s Disease community, we want to thank you again.

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Details: Category: Wilson's Warriors

In the summer of 2014, our lives got turned upside down. Our 14 year old son, Harrison, was showing strange signs of awkwardness, slurred speech and drooling. He had just “shot up” a few inches in height and it seemed that with this growth he had become an “awkward teen”. While these changes seemed a little excessive he was truly getting tall and gangly. His slurred speech and drooling we thought must be from his new braces. And yet, to us, it was a little unsettling…something didn’t seem right. Were we overly concerned? Were we seeing more than what was there?

Every day we seemed to say: “Harrison sit up straight!”, “Close your mouth and stop drooling!”, we continually hounded him. We felt that he wasn’t making an effort and we felt bad about it. He was also not himself. He was lethargic on stage when he performed his music and he just wasn’t very responsive when playing hockey. At one point he was diagnosed as having ADD.

Then one day we noticed a tremor in his arm and this, we could not attribute to puberty, growth spurts or anything normal. When the pediatrician checked him out, she could find nothing. “He seems normal,” she said, “but that tremor is strange”. As a precaution, she sent us to a pediatric specialist who did her own tests but said the same thing: “He seems normal but that tremor is strange.” And so she ordered an in-depth blood test, thinking that nothing would result.

When the blood was tested, they called us and had us bring him immediately to Toronto Sick Kids Hospital emergency care where we were told a Neurologist would be waiting for us. There, they wanted to perform an MRI scan of his brain, thinking that there may be a tumor. They also called in an Oncologist preparing us for a spinal tap to be done. Harrison felt like he was “in a dream” but for us it was a nightmare. The MRI did not appear to show anything until the Radiologist took a second look and noticed that a part of Harrison’s brain showed atrophy. The Radiologist and Doctors collaborated and swiftly confirmed the diagnosis: Harrison had Wilson’s Disease. This was seemingly better than a brain tumor or cancer we thought, but we had never heard of Wilson’s Disease, and how bad could it be? This was to start our new journey as a family…to understand, to learn and to cope with Wilson’s.

It continues to be a journey of discovery but we are learning not just about the disease but also about the challenges: the challenges of access to costly medications, of navigating the health care system, of misdiagnosis, of treatment and of the need to have support. Support of not only one another, but as a family and as a community. Wilson’s is not going away and remains misunderstood. And there is uncertainty about how much Harrison will “bounce back”. But with medicine and therapy, we see that his condition has already improved somewhat and he has become diligent in his effort to ensure that he eats foods low in copper.

We would love to see a strong Canadian chapter of the WDA, an organization that has provided us with invaluable support and is our only true advocate.

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Details: Category: Wilson's Warriors

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.

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