Science didn't understand my kids' rare disease until I decided to study it | Sharon Terry

Meet Sharon Terry, a former college chaplain and stay-at-home mom who took the medical research world by storm when her two young children were diagnosed with a rare disease known as pseudoxanthoma...

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The best Christmas my children ever had was also the worst Christmas my husband and I ever had. Elizabeth, age seven, and her brother, Ian, age five, couldn't imagine why they were getting everything they wanted for Christmas. The reason Santa was so generous was because of something my husband Pat and I knew and the kids couldn't comprehend. Something that we had just learned, and it terrified us. This was 1994 and the story actually starts a few years earlier. For a couple of years I had noticed a rash on the sides of Elizabeth's neck that looked like prickly heat. For those same years, my father and brother both died of cancer, and I was probably overanxious about illness. The doctors assured us there was nothing wrong and I sho...
Science didn't understand my kids' rare disease until I decided to study it | Sharon Terry
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