Fellow CDH1 Bloggers and Support

Check out these other active bloggers.  Blogging helped me, maybe it can help you too!

No Stomach for Cancer – Personal Stories

Steve: Steve Dang – Reflections on the ride of a lifetime: cancer free, stomachless, and loving life!

Marne: Life without a Stomach

Rachel: Foodie with No Stomach

Other resources that I have found interesting:

Facebook

CDH1 Mutation Gene

Support Group for Partial and Total Gastrectomy Patients

No Stomach for Cancer

Books

The Art of Eating without a Stomach

3 thoughts on “Fellow CDH1 Bloggers and Support

  1. I’ve recently been diagnosed this year with the cdh1 gene after losing my nan uncle and cousen aged 27 feb this year I’ve under gone my endoscopy and results are fine for now I’m desperate for a baby can any one advise on best routes to go in torn as I have a 4 year old daughter who I had when I didn’t no I had the gene it’s a tough call . I’d be great full for any feed back thanks

    • I know that in Ontario it costs around $15,000 to go the IVF route. You may also want to speak with a fertility specalist if you are considering IVF to discuss timeline if you choose that route. I have spoken to women who have had healthy children post gastrectomy as well (if you are also considering surgery before or after children).

      • In the UK it’s around £7,500 I have appointments to see different genetic councillors to offer some advise. I understand the Ivf way is very stressful and may need counselling along side as its not 100% garanteed. Was just wandering me what other people’s experiences are I’ve come across many with the cdh1 gene already had three children before knowing about the gene
        Thanks Sam

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