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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My 14 year old daughter Teagan, shown in the photo, was diagnosed with Wilson’s Disease at the age of 8.
In the span of a year Teagan had easily fractured 3 bones so I asked our pediatrician to test her vitamins levels and test her for Lupus. Her first blood work came back with her liver enzymes in the 200 range. Two weeks later we ran the tests again and the enzymes were in the 300 range. We were sent to Seattle Children’s Hospital for an ultrasound which didn’t indicate a problem. Two weeks later we went back to Children’s for an eye exam but there were no rings in her eyes. A week later we went back for a liver biopsy which confirmed she had Wilson’s Disease and moderate damage to her liver.
Since being on Gluzin for the past 6 years and avoiding copper in her diet her disease is under control.
We are so thankful for a wonderful pediatrician who stayed on top of things and especially having Children’s Hospital and Dr. Hahn so near by.
Teagan is happily starting high school in September.
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Our lives were turned upside down when our daughter Shaylee, at age 5, was diagnosed with Wilson's Disease on January 15, 2016.
She has been in and out of the hospital with illnesses and no diagnoses. Her liver enzymes were off the charts with no explanation. Finally with some pushing from mom the doctors were willing to listen to her concerns and do a liver biopsy. The doctors didn't know much about Wilsons Disease and when she was diagnosed with it we were sent to Children's Hospital of Milwaukee.
Shaylee is now 7 and doing well. She eats a well balanced low copper diet, medication to chelate her liver and vitamins to replace the ones that are low due to the medication.
We want to help educate others about this rare disease.
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From the beginning symptoms of small tummy aches as an 9 year old, to a liver biopsy and a diagnosis in March 2009 that rocked our world, Blake is resilient. Now 18, and a recent high graduate, Wilson's Disease isn't winning. Medications, food allergies, a supportive family, friends, and prayer is what makes this adjustment to life possible.
We walk for Wilson's Disease to thank those who have supported Blake, to meet other patients and families in Arizona who understand, and to bring awareness to this orpha n disease that has affected so many.
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The first time I heard about Wilson’s Disease was in November 2016. My brother, Matthew, had been admitted to the hospital after results processed from routine bloodwork showed dangerously elevated liver enzymes as well as a high blood alcohol level (despite him not having a drink since the evening prior). After further testing, the doctors first mentioned Wilson’s Disease, and at this time Matthew mentioned having tested positive as a WD carrier on a genetic test he and my sister in law had a couple of years prior. Even with this information, the hospital staff treated him for alcoholic cirrhosis. His liver and pancreas were significantly inflamed and he was given steroids to take the swelling down, but the inflammation continued and the results of his follow-up blood test were even worse than the first. He was admitted to Georgetown University Hospital, where we were lucky enough to come across a doctor more familiar with Wilson’s Disease, he took special interest in Matthew and was able to get him placed on transplant list for a new liver. My brother was at the top of the list for the entire region- it wasn’t long before they found him a match. Unfortunately, only about 20 minutes after we got the call, the doctors informed us that they had found an infection, and would not be able to continue with the transplant until it was cleared. This infection led to more, and his health deteriorated quickly, he was put on a ventilator, and was requiring blood pressors in order to keep his blood pressure up. In just a few short weeks, my brother went from a happy healthy 32 year old to fighting for his life. His body became too weak to fight the infections, and too unstable for any invasive procedures. He passed away early in the morning on December 26, 2016.
He was a proud new father, a successful lawyer working for the Department of Justice, and the only sibling I had. Losing him so early will never make sense, and knowing that if we had only known sooner he may still be alive today has made it all so much harder to swallow.
Since he passed, one of the unidentified markers found in his genetic results has been linked to Wilson’s Disease- He wasn’t a carrier after-all. If only he had been told that there are hundreds of mutations of this disease, and that more are found all the time- he wouldn’t have brushed off the fact that he was a carrier, and would have had further testing.
If the doctors that treated him had not dismissed him so quickly as an alcoholic, and had taken the possibility of Wilson’s Disease more seriously. If only my parents had known that this was ever a possibility in the first place…
There are a lot of “if only’s” and although it is too late for my brother, it is important to me to spread awareness about Wilson’s Disease so that other’s may not face the same fate.
Because WD is genetic, I have since gotten tested myself. After urine screenings, bloodwork, an ultrasound and gene testing I discovered that I also inherited the disease. Because we caught it early enough, before I have any serious symptoms, I should be able to live a normal life as long as I comply with my treatment. My brother saved my life.
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