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The only reason I can think of that a study would require a copper-only (non hormonal) IUD is to eliminate any hormone interactions with the medication they are testing. And there is some evidence out there that hormones play a role in CF (studies showing that women have a shorter life...

Our son is 2 1/2 and he has DeltaF508 and E60x. The E60X was not picked up on the extensive prenatal carrier screening. The red flag was that he was born with meconium ileus. So obviously he is pancreatic insufficient, but other than the meconium problem, he has gained weight well and so far...

The SFGate article has more information about the background. I'm on the fence on this, it's helpful to hear from Ratatosk that it's possible to have two mutations and still pass a sweat test (didn't know that!). I guess I lean more towards Printer's reaction. If I knew there was another CFer in...

Coconut oil as someone recommended. Also, to keep it moist I use a combination of whole milk and full fat sour cream. That's a good substitution for yogurt. For whatever the yogurt amount calls for - I generally will do half milk and half sour cream. I'll try to post my recipe later but I don't...

Congrats on your new little girl! We were in a similar situation - echogenic bowel at 20 weeks with a healthy 2 1/2 older child. Only our OB/GYN told us not to worry about it, it was probably nothing. Actually four experienced doctors missed it completely because my husband wasn't identified as...

Just FYI, the Sick Kids URL above is VERY old, I'm not sure if anyone even updates the website anymore and it will just give you a hit on one young female patient with E60X that passed away at age seven before 1991 - pretty depressing and not accurate for today's CF patient! The better website...

My 18-month old son has DDF508 and E60X as well. We have found less than half a dozen people online so far with the mutation. Let me know if you have other questions. And congrats on your beautiful baby girl!

Nevermind, that's what I get for using Google. The site only works if you're on the "dot org" version, not on the "dot com" version for some reason. Incomudrox's link works - thank you!

Nevermind, that's what I get for using Google. The site only works if you're on the "dot org" version, not on the "dot com" version for some reason. Incomudrox's link works - thank you!

Wait, I figured it out - you need to be on the "dot org" version - not the "dot com" version.

Wait, I figured it out - you need to be on the "dot org" version - not the "dot com" version.

Is the site no longer working? I can access it from my phone but when I use IE or Firefox from two separate desktop computers, it won't let me get past the home page with the green button "Enter the site for CF patients, family members and carriers." Super bummed out!

Is the site no longer working? I can access it from my phone but when I use IE or Firefox from two separate desktop computers, it won't let me get past the home page with the green button "Enter the site for CF patients, family members and carriers." Super bummed out!

My son has CF, with a fairly rare mutation from my husband side. My husband's father has been suffering from sarcoidosis for many years. He's had trouble getting proper treatment because we were told it's a disease that affects primarily those of African descent and he is of Northern European...

My son has CF, with a fairly rare mutation from my husband side. My husband's father has been suffering from sarcoidosis for many years. He's had trouble getting proper treatment because we were told it's a disease that affects primarily those of African descent and he is of Northern European...

The one piece of advice I would give you is that you CAN breastfeed a CF baby if you want to, even if they have a NICU stay! It was really important to me and we were able to make it work with our son, who was born with MI and had surgery a few days later. I rented a hospital-grade pump from...

The one piece of advice I would give you is that you CAN breastfeed a CF baby if you want to, even if they have a NICU stay! It was really important to me and we were able to make it work with our son, who was born with MI and had surgery a few days later. I rented a hospital-grade pump from...

We were also told that hot tubs...not a great idea. But splash pads, pools, clean lakes are okay. Our CF doctor told us she has an older patient who worked at a water park for a couple summers and he never cultured anything.

We were also told that hot tubs...not a great idea. But splash pads, pools, clean lakes are okay. Our CF doctor told us she has an older patient who worked at a water park for a couple summers and he never cultured anything.

We were also told that hot tubs...not a great idea. But splash pads, pools, clean lakes are okay. Our CF doctor told us she has an older patient who worked at a water park for a couple summers and he never cultured anything.