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I was reading a post on DIOS from April and your comments on pancreatitis/mucus barrier. I find your posts informative, so I thought I’d ask your opinion. My daughter is in a constant state of some form of pancreatic pain. Docs don’t take it seriously, since her lipase is only slightly increased. Last week, after an ER visit, I read an article about slightly elevated lipase being used as a cf diagnostic tool with marginal or low sweat chloride results. I was wondering if you ever find this to be true. In chronic pancreatitis, are the enzyme levels ever crazy high? She never tests that high, but they do get elevated. She has one mutation, and the 5T/12TG variant, which ambry says are both pathogenic. Jewish says that she has cf related disease, don’t treat her for cf, but monitor her annually. How can we manage what she has going on? I see you have small duct disease, how small is your pancreatic duct? Hers is 0.5 mm. Any insight on this would be appreciated. We are in Longmont

Thanks so much for your reply. I'm just seeing this message now as I haven't logged in since Sept. I have my child's third sweat test tomorrow and am freaking out a bit. I would like to join the group, but would it show to all my friends? I feel like this is my son's info to share if/when ready. I would love to chat directly. If you ever have the time, please drop me an email at jenniferguon@gmail.com.

Hey, my name is Jake Sperry. I am a 41 yr old CFer living in Durango. Thought I would give you a shout out. If your ever in this part of CO, hit me up.

hi, you are doing a nice work. I am feeling happy with this community.

Hi, I am very interest about the inhaling ozone gas post of you. Are you still using it?

Hi! Thanks for friending me. I was wondering what mutations you have?

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, my son was just diagnosed with these gene mutations. I’d love to ask you guys questions.

Hello! I just found out my son has these gene mutations. Can I ask you some questions?

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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!

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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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