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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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Sarah Kundinger warrior

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. 

kundlinger fatherHe 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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