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.