Many people have experiences dealing with PTEN but with some people, it is new to them and can be scary. It is always nice to hear other people's stories so here is mine.
I am in charge of promotion and awareness for PTENUKI. I recieved my diagosis after my niece was born. I was given the choice of whether I want to be tested so I went through with it. When I was told about it, I was upset at first. I did not understand it and I was scared because all I kept seeing was that it was associated with cancer. I have never shown any symptoms related to PTEN apart from having a big head. After this, I was given the opportunity to sit down with the genetics doctor and counselor who explained everything to me. I was so happy to find online support as it really helped to speak to other people who understood what I was going through and I really enjoyed meeting people at the patient day. I currently have one daughter and we went through the PGD process to have her. This is an IVF process but they create a test to see which eggs have the pten gene and implant an egg back which does not have pten. This means she does not have PTEN. I know this can be scary but if I could give you any advice it would be to talk to others. Family can be a great support and there are also many people you can reach out to on here. ... See MoreSee Less