Story about Juvenile polyposis syndrome .

My Story

Feb 10, 2017


Hello everyone. It was nice to find this group. I was diagnosed with Juvenile papillomas of the vocal cords at 18 months old in 1968. My parents lost count but say I had 100 + surgeries. None of them laser. At the time I was diagnosed I was one of 3 known cases. I don't know if that was in America or the world but at the time it was considered rare. My Dr was Kazem Ahmad Marandi who passed away in 2002. Best ENT ever. My last surgery was at age 23 just after my daughter was born. I still have a raspy voice, but I have one. I suffered all the things you or your children did growing up. I sill have to put an adult or two in their place when they think my laryngitis is funny. My favorite was a cashier who asked me if I was sick. I told her yes and twisted too and walked away. It breaks my heart to know there are so many who suffer this now.

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