> Peutz-Jeghers syndrome > Stories

PJS A lifetime of feeling alone

My name is Dale. I was diagnosed with Peutz Jeghers Syndrome in 1993 when i had my first surgery for obstructing Polyps however i have been carefully watched by the Drs from the age of 1 as my father had this syndome all of his life . I had the early signs from the age of one with freckles on my lips so have been undergoing tests and checks from an early age. My father passed away in 1991 from cancer of the pancreas but suffered all of his life with obstructions and abdominal pain. When my father was alive, this disease was less widespread and less was known about it so not much could be done for him except operations when he suffered blockages. He had his first major surgery at the age of 3 when almost nothing was known about it. While my brother and I were growing up, we witnessed my dads suffering and it used to frighten us to see him go through so much pain

World map of Peutz-Jeghers syndrome


Find people with Peutz-Jeghers syndrome through the map. Connect with them and share experiences. Join the Peutz-Jeghers syndrome community.