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Wilson Disease

Updated on August 11, 2012

Wilson Disease and My Small Experience

December 13th, 1993 my father passed away. I was the youngest of six, he and my mother had just adopted 4. A brother and sister then a little later twin sisters as well.

My father had died from Wilson Disease. Wilson Disease is: a genetic disorder that prevents the body from getting rid of extra copper. Sure we need some amount of copper but to much will poison the body. This disease will build up copper in the liver, the brain, the eyes, and over time other organs as well.

My Mom said our Liver is like a windshield wiper. It cleans all the copper off leaving just the little bit that we need to function properly. My dads took that copper and flung it around the body. Poising him.
I am not sure if this is correct or not but it helped me to understand as a child what happened to my father. I am not so sure I could explain it to a child any better

What Is Wilson Disease To Me:

Wilson Disease took my father away from me a month before my third birthday. Some memories are with me and I am not always sure if it is just my imagination. The worse memory I have is touching his cold hand as he laid in the coffin. That I remember. My sister Candy lifted me up so I could say my last good-bye to my daddy.

To me Wilson Disease is a sickness that kept me from knowing my father. All I have is stories from other people. Opinions from other people. Wilson Disease, that took something away. Something a child will never get back.

Without this disease I would have had a different life.

Signs of the Disease

Wilson Disease does not always attack the liver at first. Sometimes it attacks the central nervous system and sometimes it attacks both the nervous system and liver.

Like my father's case liver failure can occur, although rare the patient will need a transplant or he/she will die.

Symptoms of chronic liver disease:

  • liver or spleen swelling

  • yellowing of the skin and white of the eyes; jaundice

  • buildup of fluid in the legs or abdomen

  • easily bruised

  • fatigued

Build up of copper in the central nervous system symptoms:

  • problems with speech, swallowing, or physical coordination

  • tremors or uncontrolled movements

  • stiffness of the muscles

  • changes in behavior

Some others symptoms of Wilson Disease:

  • anemia

  • low platelet or white blood cell count

  • slower blood clotting

  • elevated levels of amino acids, protein, uric acid, and carbohydrates in urine

  • premature osteoporosis and arthritis

As a child I knew I could end up with this disease and I was always worried. I worried that I would die like my father. Young and with children. My father will always be in my heart and I will never forget what little memories I have of him. Even if I am unsure if they are just dreams I had or if it really happened.

Who Should Be Tested

If you have abnormal liver tests with symptoms of liver disease with or without neurological symptoms you should be tested for Wilson Disease.

Anyone with a family history of this disease, especially those who have an affected parent or sibling, should also be screened.

Please get screened before symptoms appear, early treatment can reduce or prevent the illness.

Goodbye Daddy!

I wish my father was diagnosed sooner. Maybe we kids could have had some more time with him. Maybe he could have even met his grandchildren. He would have had 13 grandchildren and he would have just turned 51 years old in July.

RIP Daddy. I wish I could have gotten the time to get to know you as you watched me grow.


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    • TToombs08 profile image

      Terrye Toombs 5 years ago from Somewhere between Heaven and Hell without a road map.

      Wow, Traci, what a scary disease! Sorry for you loss. I, too, say farewell to my father in 1993, but I was 25 at the time, but my son (who was 18 months old) loved him and talked about him often for years afterwards. :) Thank you for sharing the information on this life stealing disease.