Patient Stories and Testimonials

After my brother was diagnosed with Lynch syndrome, I spoke with my doctor and he referred me to a certified genetic counselor. I immediately met with a genetic counselor and a geneticist and they took the time to explain the Lynch syndrome diagnosis. They were understanding and sensitive to the emotional gravity of the situation. They gave me time to process the information and did not pressure me to get genetic testing. After some thought, I went back a week later for genetic testing, which consisted of a simple blood draw.

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Nov. 8, 2013, was a beautiful fall day until abruptly and tragically it wasn’t. Unexpectedly, my youngest sibling collapsed while raking leaves and died immediately at the age of 54. In the midst of the shock and grief of his loss, his family began a journey into the previously unknown world of a rare genetic heart disease. This world is filled with mystery and anxiety. An excellent local cardiologist in Elkhart, Ind., offered what he could, but he recognized this problem was beyond his scope of practice. Where to go now?

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I have a mental illness. I live with Generalized Anxiety Disorder (GAD). I’ve been in and out of therapy for almost half my life. I was 47 years old when I was properly diagnosed with the disorder, but I’ve felt different from other people since I was 8. This is a long time to wonder, “What’s wrong with me? Why am I like this? Did I do something to make me this way?”

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