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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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Janice Wagner warrior

Hi. My name is Janice and I'm 57y/o. In 1975, at the age of 15, while in 9th grade, I was diagnosed with Wilson's Disease. I have definitely been one of the lucky ones!!!!

I presented neurologically with symptoms that mimic Parkinson's. At that time, I drooled, had tremors, slurred speech, difficulty with swallowing, was generally uncoordinated, “giddy” per my mom and had illegible hand writing, so much so that my teachers used to give me my papers back saying that they couldn't grade it because they couldn't read it!!

I was on the morning announcement system and there were reports that it was too difficult to understand me because of my slurred speech. I couldn't read the announcements because my arms had such bad tremors that the paper wouldn't stop moving. My gym teacher called my mom to report that she noticed I had become uncoordinated in class. Kids that supposedly were my friends made fun of my slowed movements, and deliberate gait. That continued into my sophomore year which I remember to be very painful emotionally.

Thankfully my mom knew to take me to a pediatric neurologist at Cleveland Clinic as I've heard nightmares about incorrect diagnoses with devastating and even sometimes deadly outcomes. As I said before however, I'm one of the lucky ones!!!! The diagnosis was made by a fellow in training; my Kaiser Fleisher rings were visible to the naked eye, which assisted him in making the correct diagnosis! I was pretty upset! I remember hearing the word brain and freaking out! All I could imagine was that my beautiful long blond locks would need to get cut off for brain surgery!! And no more pizza or chocolate!! No way- they were my favorites of all food on earth!!!! (The thoughts of a 15y/o)‼️‼️

Thank God I was diagnosed early enough so that most of my symptoms reversed themselves over the years with the use of Cuprimine and following a low copper diet.

Years of being on the Cuprimine took a toll on my skin, and I eventually developed two rare side effects; Elastosis Perforans Serpiginosa otherwise known as EPS and what some people just call progeric wrinkling, but my dermatologist calls Elastosis which essentially is loss of elasticity of the skin. It occurs at the neck and at joints mostly.

I have always been extremely self conscious of these wrinkles and the EPS lesions especially when they were super obvious and presented all over my neck. Again, though, I lucked out as my understanding is that 50% of the time Cuprimine can exacerbate neurological symptoms. I thankfully didn't succumb to that one.

Trying to find a doctor to switch me to Syprene, a less toxic drug,presented a whole nother plethora of challenges. That was finally accomplished, and another switch and now I have been on Galzin for approximately 23 years.

I'm an Occupational Therapist, married, and have a son.

My later year struggles with WD have mostly been early arthritis requiring the need for bilateral knee replacements, and a few C-spine fusions starting in my thirties. I’ve also struggled with taking the zinc on an empty stomach as I developed Insulin Dependent Diabetes when I was 29 y/o and I sometimes awaken with a low sugar or have one right before bed which of course requires food and that is when I normally take the zinc, of course! I also need to say that I have recently had many issues with balance/falling a lot and memory/ not remembering words. Well, the FIRST thing to come to mind is of course, Wilson's. Could it be rearing it's ugly head AGAIN?? Of course it could, but it wasn't. It was other things causing these problems, thank God again!!

On my last note, I again want to reiterate HOW LUCKY I AM AND HOW BLESSED I FEEL!!!! And it is much more difficult living with the Diabetes than with the WD!!! I still consider myself a Wilson's Warrior however!!



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