My greatest fear is that one of my children inherits this shitty gene. Even worse would be that my oldest daughter has the mutation and it was passed on to my grandson. I am barley out of the starting blocks and this genetic mutation could have moved on two generations. That is my definitation of fear, and I lay awake at nights thinking about it.
That said, there is HOPE.
Now I am not going to take any credit for what you are about to read. That comes from an amazing young lady going through the same thing my sister Mel and I are. Her name is Heather. She had her stomach removed last year due to the same genetic mutation. In her family's case the mutation turned into cancer that claimed her mother's life. Now Heather and her husband worry about the same thing as I do. They have a young daughter and struggle with the same question, WHAT IF?
Here is one of Heather's blog dated June 17th....
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This man right here is the man, the myth, the legend....he is nothing short of amazing and someone I really look up to.
Meet Dr. Parry Guilford. He is the Director and Principal Investigator of the Centre for Translational Cancer Research in New Zealand. HE is the man who discovered the CDH1 mutation and continues to research it.
I have been in contact with him through email and he is kind, caring, and quick to reply back with any questions I have had.
He just received a 5 year Grant from the New Zealand Health Research Council to continue strong research on the CDH1 mutation and HDGC. He is EXTREMELY confident that by the time Paige is able to decide if she wants to test for the mutation (she has a 50% chance of the mutation), that she will NOT have to have a total gastrectomy. He has spoken, before, about Chemoprevention Approaches...specifically one where 1 week every 5 years, these kiddos (grown at this point) would take a low toxicity chemoprevention medication to avoid HDGC. They are "making great progress identifying weaknesses in the cells with CDH1 mutations and there are a few drugs which are looking promising (at least in cell culture experiments)." It's unlikely that they will have something set in stone within the next 5-10ish years, but "hopefully we will have started trials by then." "It will take quite a long time before we are confident that the chemoprevention drugs are working."
Hearing all of this great news from Dr. Parry Guilford makes me SO happy...my whole day, week, month, and year were MADE hearing that Paige and any of her cousins IF their parents test positive will NOT have to have a TG and there will be other options!! :) :) :)
Like I said, Dr. Parry Guilford is nothing short of amazing and I appreciate ALL he has done for myself, my family, and other CDH1 families. I don't think he realizes how great he truly is, but I have tried to let him know exactly how I feel!!! <3
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I can't echo these feelings enough. As a parent, as a grandparent I can only hope that there are people out there like Dr. Guilford who care enough about this crappy gene I have to continue to fight for us, for our families.
It is people like Dr. Guilford who give me hope.
As for the amazing Ms. Heather. I have not yet had the pleasure of meeting her. We only know each other through our blogs, Facebook, emails and text. Once things slow down for both families we will get the chance to meet.
Thank you Heather.
If you would like to read more about Heather's story visit the No stomach for cancer website and go to the blogs link. You will find her there.
