The AMEN Support is currently in the process of scheduling a series of one-day conferences at various major medical center locations. Please look at this page for further information.
We have also been asked to set up MEN support groups. Please let us know if you would be interested in having a support group for MEN in your area so that we can let these major medical centers know and we can plan accordingly.
2 Comments
Joanna Martin
Aug 23, 2011
I live in Crestview, Florida. I was diagnosed with MEN I in 1992 at age ten. At that time I had two tumors removed and also my tyroid glands (3.5each) were removed. Recently (July 2010) I had my first child and he also inherited the exact copy of my MEN I gene. He is currently under observation as well as I am. In December 2010 more tumors appeared on my pancreas and had to be removed (pancreatectomy). As of today, I continue to be under observation (EUS scans every four months) and hoping nothing new will be detected. I am seen at UPENN under Dr. Metz guidelines. Looking forward to new information on this website. Joanna Martin.
I live in Hamilton, Ontario. My son was diagnosed with MEN2B in 1990 at age seven. His daughter, born December 2010 also has been diagnosed with MEN 2B testing positive for the RET gene 918 and she will have her thyroid removed in September 2011. I do not know of any support group in this area and would welcome one. My son is followed by an oncologist at Princess Margaret Hospital in Toronto and the baby will be operated at McMaster University Hospital in Toronto. We are interested in finding the best MEN2B /MTC specialist in the area. Regards, Ellen Hekert
Joanna Martin
I live in Crestview, Florida. I was diagnosed with MEN I in 1992 at age ten. At that time I had two tumors removed and also my tyroid glands (3.5each) were removed. Recently (July 2010) I had my first child and he also inherited the exact copy of my MEN I gene. He is currently under observation as well as I am. In December 2010 more tumors appeared on my pancreas and had to be removed (pancreatectomy). As of today, I continue to be under observation (EUS scans every four months) and hoping nothing new will be detected. I am seen at UPENN under Dr. Metz guidelines. Looking forward to new information on this website. Joanna Martin.
Ellen Hekert
I live in Hamilton, Ontario. My son was diagnosed with MEN2B in 1990 at age seven. His daughter, born December 2010 also has been diagnosed with MEN 2B testing positive for the RET gene 918 and she will have her thyroid removed in September 2011. I do not know of any support group in this area and would welcome one. My son is followed by an oncologist at Princess Margaret Hospital in Toronto and the baby will be operated at McMaster University Hospital in Toronto. We are interested in finding the best MEN2B /MTC specialist in the area. Regards, Ellen Hekert