Hi, my name is Kayla Weselowski. My sister Chelsea and I were both diagnosed with Wilson's Disease in 2012. We live near Winnipeg, Manitoba, Canada.
Chelsea is 29 years old and has severe brain and tissue damage from the disease as shown on multiple MRIs. She requires 24/7 care and has not been able to talk or move much since 2013. She was in the hospital for two years taking zinc, then tetrathiomolybdate which caused low WBC and several bouts of pneumonia, and now she currently takes trientine.
I am 26 years old and have chronic pain, anxiety, depression, scarred muscle tissue, and muscle tension/spasms. Initially, I presented with muscle pain and tension, a fatty and enlarged liver, fatigue and swelling. For treatment I tried the same sequence of medications as my sister, and I am currently taking trientine as well. I believe that this medication causes much of my abnormal muscle pain, tension and spasms as side effects of the drug, but treatment options are limited at this time.
My goal is to raise awareness about Wilson's Disease, and to fund research for diagnostics and new treatments that will greatly improve the quality of life for people all of the world that are living with this disease.