I have Lynch syndrome. I am a wife and mother in my forties and received my master’s from Northwestern University in 2012. Though I am not a doctor, I do possess a strong background in biology and have conducted extensive research on Lynch syndrome. I have never had any form of cancer but my brothers and my father have been affected by colon cancer. I was diagnosed with Lynch syndrome in May of 2011 — my doctors did not know anything about Lynch syndrome at the time — this forced me to educate myself about Lynch syndrome and to become my own advocate for my medical care.
This is all started with a blog — I began writing about the unexpected implications of the recommended prophylactic hysterectomy and oophorectomy for my mutation: MLH1. What initially began as blog has now become a nonprofit to help those with Lynch syndrome. Aside from my story, my hopes are to provide you with an exceptional wealth of information and resources on Lynch syndrome, to create a community of support for those of us afflicted with this heinous syndrome, and most of all, to inspire you, empower you, and perhaps provide you with some solace in your fight against Lynch.
Founder and Executive Director of the nonprofit: ihavelynchsyndrome.org