Hello, my name is Casey, and I am glad to find this community. I am 36 years old and was officially diagnosed with Gardner's Syndrome in January of this year. I have had tell tale signs for a while, but didn't want to acknowledge it. This disease has attacked our family hard, I am the 4th generation to have the mutation and just lost my mom to Gardner's less than a year ago. I know what to expect for my situation, for the most part, but some of the side issues or complications that could arise are what concern me. I have found these forums to be comforting to know I'm not by myself in this fight, everyone who had Gardner's in my family has unfortunately passed away. I have had 3 surgeries this year; a dental/jaw surgery for unerrupted/extra teeth, Total Thyroidectomy, and the first leg of my Proctocolectomy/ipaa/loop surgery just completed a few weeks ago. My jaw surgery was to make sure I didn't permanently feeling in my face/ear and decided to have my thyroid removed because of adenomatous goiters were abstracting my airway and vocal chords. The colon surgeries are self-explanatory. As far as I am concerned God has blessed me with great doctors and surgically I have basically had no complications and look forward to having the Takedown performed, when the time is right.
Now that i have eliminated my cancer risks at this point, I am now shifting my concerns towards learning more about Desmoid tumors, as it carries a nearly 100% chance in my case at least, based on my family history...everyone had them and died from them directly/indirectly. The hardest thing for me period though is knowing that I have two kids that need to be tested and it breaks my heart to think I could be passing this legacy onto them as well. They are being tested soon.
Thank you for allowing me to join this community; it is important to keep a positive outlook, and the priceless information/experiences in forums helps me do just that!