How much do you think CF would be on your radar?

Avatar for adamsmomplus2
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Registered: 09-09-2000
How much do you think CF would be on your radar?
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Sat, 02-11-2012 - 10:31pm

I got an email today from an old HS friend today. A friend of hers had just had genetic testing and found that both she and her dh were CF carriers. They do not yet have any children and this news is making them evaluate whether they want to/should have bio children. My friend sent me an email to ask if I would call and talk to this woman about CF. Of course I called her. We had a nice conversation, and, thanks to the ladies here, I was able to give her many perspectives, not just my own. She is still evaluating her options and working on what is the best course for her family.

This made me think, though, how much was CF on your radar before you had a child with CF? I know I had heard of it way back when I was a kid (I think I remember seeing the Alex Deford movie on TV). But, as an adult, not much. I had a friend at church whose dd has CF, which was just a few months before we learned about Sarah. Then, right after Sarah moved in with us, another lady at church had temporary custody of her nephew with CF. I don't even know if I would have caught on to that if it hadn't been for Sarah.

For me, if I didn't have Sarah, I honestly don't know if I would really think about CF at all. I don't even know if I'd have heard about treatment advances or anything much. What about you?

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Avatar for Cmmelissa
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Registered: 11-13-2008
That's a very interesting question, I hope you don't mind me answering even though I'm coming from a different perspective.

CF wasn't much on my radar before my twins were in school and had a classmate with CF. Moderating this board has really opened my eyes to what she and her parents are going through. I don't know all the time how her health is, she doesn't really post about it (my boys and I are friends with her on FB). I'm glad she has that outlet to keep in touch with her classmates, it's been a couple of years since she's been able to attend school.

Avatar for adamsmomplus2
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Registered: 09-09-2000

Oh I totally welcome your perspective, Melissa. It is interesting to me to find out what the perception and experience of CF is all around us. I was wearing a Great Strides shirt during my workout the other day which prompted a lady to ask me my connection to CF. Turns out that she worked at Stanford medical school several years ago and knew "of" CF and was wondering what it was like now. We had a nice conversation and she was pleased and surprised by treatment advances and increase in life-expectancy.

I'm sorry to hear about your boys' friend who isn't well enough to attend school. That is not something we've had to deal with and I'm really hoping it never is.

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Registered: 10-12-2010

CF was on my radar before we had Paige, but not much before.

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Avatar for adamsmomplus2
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Registered: 09-09-2000

You are so right, Monica. Sometimes, when I think about all that could go wrong, either conceiving, prenatally, at birth or during childhood, I think it's miraculous that anyone makes it to adulthood.

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Registered: 07-17-2005

Great question!

Avatar for adamsmomplus2
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Registered: 09-09-2000

That's pretty much what I told the lady the other day. If you use the internet as your guide to CF, it's terrifying.

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Registered: 07-30-2008

I cant say that I would never think of CF unless if would be for my daughter, I was tested after I was carring Ashlynn and we still had her! I would never live life without her! I have learned so much from her already and she is only 6 years old. God gave us these children to teach us and everyone around them!!