Watch out if you have a rare condition like me!
I had found an abstract of a journal article about my condition, arhinia, in October 2010. I noticed that my surgeon from France was one of the authors. I emailed one of the authors to see if my case was part of the cases. The reply that it was. I finally got around to purchasing the article on January 1, 2012. Not only was my case part of the article but there were photos of me. I never consented to anything appearing in any journal article. The authors stated that written permission had been given and it was not. I was both shocked and horrified!
The author told me that he was publishing a book about my former French plastic surgeon and that I should read it. I finally got around to purchasing it this month. Had to spend over $90 to buy both volumes! I discovered my photos in the book! Not only that my case is to be part of a museum in France. WTF!
I was recently asked to submit my story and photos for my employer. (Yeah I have been working since August 2011!) I have to sign permission slips for my photo to appear on the website. It is too bad that the medical profession is above that!
My mission is to stop the practice of sharing medical information among medical professionals whether are retired or not! What has happened to me is NOT right especially in this day and age of HIPPA!
