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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- Category: Wilson's Warriors
Our family was hit hard in 2013 with 3 of our 4 kids being diagnosed with this deadly, life-altering disease. Since that time, we have had the sacred privilege of hearing story upon story of families that have been affected by WD. It is our deep desire to raise awareness of this rare and orphan disease, connect families that have or have been affected by WD, and of course to raise funds to further research for better medications for the future. My family and I invite anyone that wants to host a Big wow in their city to follow the link on this page for information and fill in the sign up form that will come to me.
Editor’s comment: Chris was the chairperson for the first two Big Wow fundraisers and is chairing again this year. Not only are Chris and his family warriors that are dealing with this disease but Chris is a warrior and champion raising funds for research and helping others do the same. Countless hours have been donated to this effort. Thank you Chris.
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- Category: Wilson's Warriors
Our family was touched unexpectedly by Wilson’s Disease on Christmas Day 2015 when my oldest daughter suddenly began showing signs of liver failure. She was admitted to the hospital and experienced numerous complications before passing away on January 19, 2016. Due to the complications and the advanced liver and kidney failure, we did not receive a diagnosis of Wilson’s Disease until after she died. Elise was 12 years old.
After her death and diagnosis, her three younger siblings were all tested. My 9-year-old daughter and 7-year-old son were also diagnosed with Wilson’s Disease. They are currently undergoing chelation therapy and are doing well.
We sponsored the Big Wow to raise awareness of Wilson’s Disease and to build a support network for those battling this life-long disease.
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- Category: Wilson's Warriors
Wilson ’s disease has affected our family for many years. In 1969 my oldest brother was very ill and the family doctor was away during the time. The doctor that was ‘filling in’ had learned about Wilson Disease and had a hunch that this was what was affecting my brother. The remainder of the family (7 children at the time, the 8th born later that year) were all tested. Five of the eight of us children (3 boys/2 girls) were diagnosed with Wilson Disease.
As we grew into adulthood we each struggled with our medicine routines, costs of the medicine and associated understanding of Wilson Disease. In August 1988, our sister, Therese, died as a result of non-compliance with the medication; for what she told doctors and friends were ‘personal reasons’. Needless to say, this rocked our family core.
In the subsequent years, we each have continued to struggle with appropriate medicine, acquiring of it; insurance declining medications, and expenses of the illness. The bigger frustration is the number of doctors that have not treated a WD patient and only know it as ‘the copper thing’.
I am an advocate for the education and support for those with Wilson Disease.
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- Category: Wilson's Warriors
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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