Hi, my son was diagnosed with the same gene mutations as your kids. I’d love to talk with you about it. I don’t know much about. Just everything I’ve read in these forums. I Messaged you on Facebook. I tried searching for the page “cystic fibrosis 2789” and I couldn’t find anything.
Hi! I doubt you check this still but in the chance you do, let me introduce myself. My name is Amy and I have two kids with the same mutation as your child. We have started an online Facebook page if you would like to join. It’s just for families with these mutations. If you want to join, find me on Facebook Amy Bergan Ellison or just go to Facebook and search “cystic fibrosis 2789”. Take care!
Hi! I doubt you check this still but in the chance you do, let me introduce myself. My name is Amy and I have two kids with the same mutation as your child. We have started an online Facebook page if you would like to join. It’s just for families with these mutations. If you want to join, find me on Facebook Amy Bergan Ellison or just go to Facebook and search “cystic fibrosis 2789”. Take care!
Hi! I doubt you check this still but in the chance you do, let me introduce myself. My name is Amy and I have two kids with the same mutation as your child. We have started an online Facebook page if you would like to join. It’s just for families with these mutations. If you want to join, find me on Facebook Amy Bergan Ellison or just go to Facebook and search “cystic fibrosis 2789”. Take care!
Hey. It’s been MONTHS since you posted that message on here about your chest pain - and I was just hoping to see how you’re doing now. I’m 14, and I also feel isolated with cf. I worry about having kids and just living a long life with cf hanging over it. If you want to talk with me, someone your age, I’m totally up for it. Sorry if this is a weird message, btw.
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Oh I am so sorry! I never was notified that you messaged me. We have a CRMS group on Facebook if you are interested?
Honestly it gets better! It's hard in the beginning because you are always looking for signs but eventually it becomes a new normal and it's not as overwhelming. You really should come to the Facebook group! We have over a hundred members who have a child(ren) with CRMS! https://www.facebook.com/groups/CysticFibrosisCRMS/
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