No Mud, No Lotus

Zen master Thich Nhat Hanh believes if people face and embrace their suffering, they will eventually grow from it and possibly turn it into something beautiful and meaningful...

Hence the phrase: No mud, no lotus. Five years ago after I was diagnosed with Lynch syndrome, I found myself mired in mud – I had no idea what would emerge from such murky waters.

A strong family history of colon cancer and early deaths within my immediate family caused me to take drastic measures when I discovered I carry a mutation in MLH1, one of the five known Lynch syndrome genes. At age 40, I underwent the recommended prophylactic hysterectomy and bilateral salpingo-oophorectomy. My difficult experience from the loss of my ovaries, coupled with the lack of information on the emotional aspects of having Lynch syndrome on the Internet, drove me to start my blog five years ago: Ihavelynchsyndrome.com.

I began writing because I wanted to give Lynch syndrome and the women who undergo the risk-reducing surgeries a much-needed voice. I didn’t feel that the medical community and some within the Lynch syndrome community were fully appreciating the effects of these prophylactic surgeries, and I found this frustrating. I knew there had to be previvors in comparable positions suffering in silence that felt alone and isolated – just as I did.

Soon after I began blogging, many people (especially women) began reaching out to me and applauding my efforts for articulating their thoughts and highlighting some of the issues previvors were facing. Most importantly, they recognized that they were no longer alone and that others were having comparable experiences.

As I began to learn more about Lynch syndrome and other hereditary cancer syndromes and writing about them, people started reaching out to me for help. My blog, initially a cathartic endeavor, became a pathway to something greater than I ever could have imagined. My writing evolved into extraordinary global advocacy efforts. Ihavelynchsyndrome, Inc. was granted non-profit status last year and is on a global mission to educate doctors and the public about Lynch syndrome and other hereditary cancer syndromes. 

My advocacy includes:

  • Helping people find certified genetic counselors. This is hugely important because specialized healthcare professionals, like genetic counselors, are aware of the variation within Lynch syndrome, including its genetics and related medical recommendations.
  • Assisting people to find the best medical care available to them. Meticulous, frequent screening is key in helping people maintain their previvor status. If cancer is detected, it will be caught early and treatment will be hopefully minimized.
  • Writing to spread the word. Writing for various publications and websites to reach numerous audiences allows me to increase awareness for Lynch syndrome.
  • Connecting online. Reaching people on various forms of social media who don’t know what they need to know helps people learn about Lynch syndrome.
  • Hosting #Hcchat (Hereditary cancer chat) every other month with Ellen Matloff MS, CGC (@MyGeneCounsel), and Amy Byer Shainman (@BRCAresponder). During this online chat, we discuss issues surrounding hereditary cancer with top experts.
  • Listening to others. Most importantly, the blog provides an empathetic ear to those recently diagnosed with Lynch syndrome.

Helping others through my advocacy efforts has been instrumental in helping me reconcile my diagnosis and situation. The non-profit Ihavelynchsyndrome.com is a lotus that has emerged as a result of those murky waters – No mud, no lotu



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