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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.

mandy swaner warrior

My family and I decided to organize a Big wow walk, Walking on Wilson’s Disease.  Wilson’s disease is what I was diagnosed with.  It is a rare genetic disorder that approximately 1 in 30,000 people are born with.  It is not easy for physicians to pinpoint because they are not aware of what the symptoms might be.

With Wilson’s Disease my liver does not process copper correctly.  Anything that Wilson’s patients eat or drink may contain copper and has the potential to accumulate in our organs, including the brain.  This is what ultimately happened to me. 

I am one of the lucky ones.  I was diagnosed soon enough.  I am able to live my life, raise my son, be a wife, mother, sister, Auntie M and be a part of the lives of three amazing step-children, their spouses and four grand babies. 

Wilson’s patients also battle with insurance companies who are not able to help with payment of claims.  This is due to certain pharmaceutical companies that have raised the price of some of the life-saving medicines beyond what is affordable.  Some of them have increased over 5,000%.  In my case, I was charged $26,000 a month for what was needed to clear my body from toxic levels of copper.  Again, I was fortunate.  I do not need that particular medicine right now, but so many others do. 

Wilson disease does not have a sufficient voice and I believe this walk can raise awareness.

 

 

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