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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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samantha aiken warrior
My name is Samantha Akin. I am 18 years old, and I was diagnosed with Wilson’s Disease in January, 2015. Some of my symptoms were, my handwriting had worsened over the years (micrographia), and I had started having fine tremors in my hands with some irritability. I also had some joint aches and swelling for a few years. However, I was very fortunate that my pediatrician thought to check for Wilson’s Disease.
The result of my diagnosis was/is that my liver is currently at stage 3 of 4 of liver failure (written in the summer of 2015). The tests that have been run: I have had one liver biopsy, one upper GI endoscopy, a hour long MRI twice, countless blood draws / tests, and several 24 hr U/A, all before my 18th birthday. I had a neurologic flare in which I had a severe headache and could not speak clearly for roughly 2 weeks. I don’t know if this is because of the high dose of medication or my brain releasing copper. Perhaps worst of all I can no longer eat my favorite food in the world, chocolate.
Overall, I would say I’m doing okay. My purpose in hosting this WOW walk was to raise awareness of this disease so more people will be diagnosed and receive treatment earlier.
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