Patient Stories

Meet Daphne

Daphne is 4 years old – she has been diagnosed with PTEN since she was just over one although they knew since birth that...

Meet Nikolas

Our son came to us at birth through foster care, and by 20 months he was ours forever through adoption. He was born at...

Meet Ross

My name Ross McRae I'm from Scotland just about to turn 21. I was diagnosed about 14 years ago maybe longer with Cowden’s Syndrome. At the...

Meet David

Meet David I will try my best to explain my mothers and my own story with Cowden's Syndrome.  My story is one of grief, knowledge,...

Meet Andrea

My name is Andrea Beilstein, and I am 48 years old. 24 years ago, I married the love of my life, Del.  We have...

Meet Amélie

I am a survivor!  My life struggles include a mastectomy with capsular contracture, infections, hysterectomy, reconstruction, oophorectomy, thyroidectomy, 20+ surgeries, and countless tests and...

Meet SARA-BETH ANN

I want to introduce you to the most Sweetest Little Angel in the world...Her name is         Sara-Beth, and when I say Angel I mean...

Meet Emmi

In late 2009 I was given a presumptive diagnosis of Cowden’s syndrome (CS); this came about in a rather unusual way. A few months...
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