Warren's Cautionary Tale
Автор: Wilson Disease Association
Загружено: 2023-02-22
Просмотров: 235
Warren was diagnosed with Wilson disease (WD) in 1980 at age seven. Penicillamine was the only available treatment at that time and he faithfully took the drug every day for decades. He had a normal, active childhood, graduated high school, went to college and eventually went to Seminary and became an ordained United Methodist Church pastor.
Warren married another pastor and they had a daughter. He was living a full life when his health took a sudden turn. Overnight, he developed neurological symptoms related to his WD - a tremor and stutter set in and he had to go on full-time disability and give up preaching.
Why did this happen in someone who continued taking their life-saving medication? The cost of his drugs skyrocketed so he cut his dose in half and his primary care physician told him that was fine. Over a decade, the copper slowly accumulated in his brain, bringing with it the devastating neurological complications.
His neurologist did all she could for him and then referred him to a specialist in Wilson disease. Warren was able to be "rescued" when his medication was increased to his original dose.
Not everyone is as fortunate. Here, Warren tells his cautionary tale and gives advice to others with WD.
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